tag:blogger.com,1999:blog-77231137053144274272024-02-07T17:58:22.982-08:00The Adventures of Miss Jennah & her Familyfollow Miss Jennah's growth and development as she challenges her disabilities including blindness, cerebral palsy and epilepsy
"Advocate, Innovate, Cultivate"Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-7723113705314427427.post-66869047418062520432015-10-20T22:56:00.000-07:002015-10-20T22:56:47.440-07:00What would it be like if ...What would it be like if I got 5-6 hours of consecutive sleep for 2 nights in a row? Would I have more energy and less bags under my eyes?<br />
What would it be like to wake up knowing that she would go to school each day? Would I be able to make and keep plans and appointments?<br />
What would it be like if she could walk? Would my knees and back be in less pain?<br />
What would it be like if she could talk? Would she tell me where it hurts?<br />
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Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com0tag:blogger.com,1999:blog-7723113705314427427.post-40437018238350825162013-07-08T15:49:00.001-07:002013-07-08T15:51:05.920-07:00Go ahead, make my day!<p>Last month, I was frantically running around getting stuff done for the end of the school year, and remember taking Jennah along on one of my errands. I remember parking in the disabled parking spot at Starbucks and began the process of unloading Jennah and her gear. I was putting together the pieces of her wheelchair at the back of the van when I heard little footsteps approaching from across the street. I looked up to see a little girl, perhaps 3 years old, crossing the street with her very pregnant mother. She pointed at Jennah’s chair and said, “look, there’s a baby coming out of that van!”</p> <p>Her mom said, “I don’t think that’s a baby stroller, but do you want to go say hi?” The mom looked up at me inquiringly, to which I enthusiastically nodded in approval.</p> <p>They came over and watched me unload Jennah. I think the little girl was a bit surprised to see a big 5-year old girl being hauled out and strapped into a chair, but her mom did a wonderful job of easing any of her concerns by chatting about Jennah’s hair (people <em>love</em> J’s hair!), her orthotics, tubing, and special chair. The little girl reached out and held Jennah’s hand, and with permission, touched her orthotics, which has butterflies printed on them. It was obvious that I was in a rush, so I thanked the mom for introducing her daughter to Jennah and we parted. As I walked away, I realized I had a huge smile on my face and that the brief encounter had made my day. It may have been an insignificant “hello” for the mom and little girl, but for me, I think still back on it and smile.</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com1tag:blogger.com,1999:blog-7723113705314427427.post-17688180842909182612013-06-28T18:11:00.001-07:002013-06-28T18:17:47.391-07:00Girl of steel … no more!<p>After my last post, where I had a bit of a panic attack, I was flooded with words of wisdom and support. Thank you, friends.</p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhDlrqlrKD9Hj7anMz3rrZ-CKX1jIM2OMd_IzLTi3oMJvX70pQNmlyrllq82QzVJTqGMrxCxmNnZjh7ygJyu534SFWcm2IVPf5_UyhJhsS_mt-y4jGkvtFRQ1ORpbZNsp0px8t2LucvD8/s1600-h/WP_001101%25255B10%25255D.jpg"><img title="WP_001101" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: left; padding-top: 0px; padding-left: 0px; margin: 0px 20px 0px 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="WP_001101" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBBDuIPxMMkgvSjhuuuJz0pnx_LXcCuKlWoU5_Y0Jx7l8S_XyuXuGpy72NTpWunPwJGR90MPjjZYugzyuRxSvDEcE-COa_JKcDtUzd543YyAGYeS_1ALo3vunfqa06Ac5BHZ-hk7UoMZk/?imgmax=800" width="213" height="244"></a>We went in for a pre-op visit the day before the surgery. It was a quick visit, but I was reassured that the procedure would be “simple” and was reminded that she had already gone through a total hip reconstruction that may well belittle any future procedures! </p> <p>Since the procedure would be early the next day, I had to ship off big brother and big sister to homes of friends and family. We are so fortunate to have such a strong support system! I spent the evening cleaning and changing sheets in hopes of removing any possible sources of infection … crazy, I know. Then Jennah had the last shower that she would have for a couple of weeks, which was heart-breaking because she really, really, really LOVES her nightly showers! I gave her the ritual pre-surgery, antiseptic antimicrobial Hibiclens (4% w/v chlorhexidine gluconate) skin cleaner treatment, which made her smell like a super cuddly sterile glove. </p> <p>I was totally wired and couldn’t sleep as I kept running times and tasks through my head:<br>11:00 PM – last medication dosage … give extra Miralax to offset post-anesthesia constipation; pack bag w/ extra clothes, formula, tubes<br>1:30 AM – switch to clear liquid, increase rate to 90 ml/hr; set alarm to 5:30 AM<br>5:30 AM – turn off feed; pack up feeding bag and leave by door; set alarm for 6:45 AM<br>6:45 AM – get up! don’t hit the snooze button! make coffee; make sure hubby is awake by 7:00 AM (my 4th child, right?)<br>7:30-7:45 AM – leave the house<br>8:30 AM – check-in time</p> <p>I was rewarded the next morning with an on-time departure WITH coffee for the road … small wins make me happy!! <img class="wlEmoticon wlEmoticon-smile" style="border-top-style: none; border-left-style: none; border-bottom-style: none; border-right-style: none" alt="Smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4a0pVoeAEkqP1wCEQ2l5MTqHr9vx8qyrFWaJHNb5Flbt8mMRggizi0z1iUbFjeuN-jTOKKtmkLpTc96HapHOL1kg2LV6wjC-_hPiHdW1ZQMNCy8FrQBoIZj157Xs13ef60go84UXQrjM/?imgmax=800"></p> <p>I always get to cruise straight to registration, with a quick smile to security and the greeters, thanks to my fancy Seattle Children’s volunteer badge. I ditched poor hubby who had to get a badge … ha ha … small pleasures.</p> <p>As we proceeded with registration, I had a spontaneous brain fart and recalled that our last visit there was with Jennah’s rehab doctor who performs Jennah’s Botox injections. We discussed the possibility of piggybacking a Botox treatment while Jennah was under general anesthesia. I went ahead and<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPjcI1Lha3_raQTSH6BQRrfZvijron06waLd1ehCRV5Al1IfcMEkQPzyHMMrz9tsWuGrunz4I-C1E_OqWAgMb8yTsdH71AMkIxXWB_S63L31_3L4EGqLPq-a4NH_T9ocEFOnK3kyNQ7RM/s1600-h/WP_001081%25255B3%25255D.jpg"><img title="WP_001081" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: right; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="WP_001081" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2pIICg0nSWWDlpsHXzAibr_jZd1yc7N_QzI5RC295mYJ4QnBwCZliiVWEjSPEWza90_8NBqmLX8SI6lik6GdmcEIzcJF8lP0fB3pxxXnENMBoJviky0EZOds8OTHMoPM7nem9W7Esz-w/?imgmax=800" width="319" height="240"></a> mentioned this to the nice girl doing our registration, and she put in a couple of calls to get Jennah’s rehab doctor paged. Of course, the doctors returns the page within seconds and as the message is relayed to the doctor, I hear through the phone, “Oh yeah! Totally!!”. Yes, rehab doctor is hip (no pun!) and young … and so very AWESOME! She has been with our beloved Seattle Children’s Hospital for less than a year, but she is going to be very successful here. The registration girl had a surprised, confused look on her face as she hung up and told us that the doctor wants to do the procedure and will “track us down”. </p> <p>Anyway, fast forward … rehab/Botox doctor got the OK from Jennah’s orthopedic surgeon for the piggyback … yay! We wiped Jennah down with more antimicrobial wipe, and changed her into a gown. The consent forms were signed, and the doctors wrote their initials on Jennah’s pecs, hips, and inner thigh so they’d remember where they were supposed to cut/poke once they get in there. Finally, the went through the safety protocol checklist and wheeled Jennah away at 10:15 AM. The rehab doctor phoned at 10:35 AM to let us know Botox was done. Then we were paged just before 12:00 PM when the hip procedure was done. We were finally reunited with Jennah just after 1:00 PM and discharged and home by 3:00 PM. All in a day’s work … phew!</p> <p>Everything went as smoothly as we could have hoped! She did have a bit of trouble waking up after anesthesia, but this is typical for her. The ortho surgeon also confirmed that we made the right decision<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkLlIc001XgRn6eZPG0mAF84Q4j6qnBYoXRFw7bxIrXtpw9UouOq-3f98KCEmD-jcgYLguJDf91rjLCCjx_jzWQdrV2FfvQr1vz_ERVVH1kZdJdCjEdEKDOA1UvgmOeYFTcrupO7UaXnA/s1600-h/WP_001088%25255B4%25255D.jpg"><img title="WP_001088" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: right; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="WP_001088" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilTvr5mTiI7eqTTtuH9lav0PyOR-1nixSU0rCBqccAAIPr1FULnOSgv9CGlRU_DXmry9F3KJxNuHTDu_8PUKZcgz3D37tOMpWsQiE5RWiwZLn8uChgzw4BOseFzwG3KcVllqsxqyF89FY/?imgmax=800" width="283" height="213"></a>n to remove the hardware! Apparently, once they got in there, they saw that there was, indeed, some irritation and bursas forming around the brackets. Wow … so glad we didn’t leave them in for much longer. </p> <p>She’s doing really well today … such a trooper! She is noticeably swollen and seems tender to the touch, but her pain seems to be extremely well tolerated! The only real issue is that I can’t get her to take in enough formula since she keeps vomiting when I get to a certain rate. I think she’ll be ok in a couple of days. She can have her first shower in 4 days and resume therapy in 2 weeks!</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com1tag:blogger.com,1999:blog-7723113705314427427.post-23218507383611646222013-06-25T23:16:00.001-07:002013-06-25T23:16:09.313-07:00June … dreading it<p>I’ve been really upbeat and nonchalant about it, but it’s almost time … June is here.</p> <p>First, Jennah completed her entire Kindergarten year!! We are so incredibly proud of her! We had an incredible staff of 12+ people who helped her develop and grow this past school year. We are planning to let her attend full-days next year for 1st grade, which includes taking the bus to <em>and</em> from school … what will I do with myself?!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLqx31txTHawIAvhErIoBKD40AeZVRF-u0E0hoMFbsJMr4PSiRbxVF7DeY1TDmNw2O3_2K3GIcxYaYOJSk1ahGA1949NnIn0SaRVP3fkipmL-q9bH256CHFpjktb992VHub3090qKhV7o/s1600-h/WP_001001%25255B8%25255D.jpg"><img title="WP_001001" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: none; padding-top: 0px; padding-left: 0px; margin-left: auto; border-left: 0px; display: block; padding-right: 0px; margin-right: auto" border="0" alt="WP_001001" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjehGqB9d6t22sKlWwTRKUkq_ZPDd7SO7jiQ-tBlmaBgRQ2GpMFxRYUJ-YoU1hbWVeuHMutELbdF8TLUn3HRvB7bAmpo8BDV8yAcDb60D2hDK20VhhCXegbFlF0boDgOawCByufFLMXPHk/?imgmax=800" width="340" height="256"></a></p> <p>Team Jennah’s Joggernauts also returned for our third year at the Epilepsy Foundation Northwest’s annual Walk/Run for Epilepsy. It was very low key this year, but we still managed to raise over $1000 from the generous support of our friends and family and we had our biggest team yet!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWz13YRWvCxHxnR7IdIKWXrQNAyEcNE_57jAC4Xk-a8t-sVMnuuNGizjqU7F0v6E19E4tYkFSYfYkaS8FOGqDqnrycJPTqkB2kNU39574J2dvE5cd2CMUbUnG5QCq6dHBwk-N3KebqiPw/s1600-h/EpilepsyWalk%252520005%25255B5%25255D.jpg"><img title="EpilepsyWalk 005" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: none; padding-top: 0px; padding-left: 0px; margin: 6px auto 0px; border-left: 0px; display: block; padding-right: 0px" border="0" alt="EpilepsyWalk 005" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrt5Plesr6UAS6QT4i2zPG42fGnZHEmh8mDPnZBq3Z2M-SUlDq4Mn0i5hI7m1lEj2ZZWQqbRexnnXT81_okaYPUbENd0sLKJgNNmckibZvIOnnO63vc9Mds5_UkziSGMmD4d8mnSDrAnE/?imgmax=800" width="406" height="287"></a></p> <p>Things are going really well … so why am I whining so much? What could I possibly be dreading? Indeed, this has been such a wonderful year for Miss Jennah. She’s been progressing so well and making huge strides and accomplishments. She hasn’t been in the hospital since March 2012, is starting to eat and vocalize, and rarely cries unless she is tired, overstimulated or uncomfortable. She is so healthy and so <em>happy</em>. </p> <p>We’re going to put an end to her happiness again. Jennah is scheduled to endure another procedure in 2 days to remove the hardware from her hips. It’s a “minor” procedure in comparison to the total hip reconstruction of 2011. It should <em>only</em> take 1 month to recover. It has been over 2 years since the reconstruction and the bones have fully healed. There is no need to keep the hardware in her body … they are foreign objects. We know that she can’t sit on hard surfaces because they bother her. We know that she side-sit at certain angles because the muscles snap against the bracket. We know this because we can see it in her face and she flinches. But she can’t tell us these things. She can’t tell us if she wants us to take the hardware out. She can’t tell us if the anesthesia makes her nauseous. She can’t tell us when and where it hurts. The Wong-Baker pain rating scale that is used for children … the one with the faces ranging from smiling (no hurt) to tears (hurts most) … is useless with her. We’re choosing for her with total disregard to her desires … right?</p> <p>We’re going in for the pre-op visit tomorrow. We’ll ask questions about procedure and recovery time. We’ll ask when she can ride and swim again. But nobody will ask her if she wants to go through with it. Nobody will know when we’ll see her smile and dance her legs again. She’s going to cry again.</p> <p>My friends and family are relentlessly supportive and have stepped up once again … you will never know how much your support means to us.</p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE16nG40QZF01qj7vZD3V3jz1aHG8nsaizLrcBO0g3jTSXp9afT46-FRwjC9Y1baJ6CY5n3keB0pJ9o0CGmqRxauQpQs0L5XSL9pAsNtMOhMDfZ_mOfwMsZs-5OYz06FTVrTib7EJ5AA0/s1600-h/005%25255B3%25255D.jpg"><img title="005" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: left; padding-top: 0px; padding-left: 0px; margin: 0px 18px 0px 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="005" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Sk-WSKoqFYXYyYUwR-HOpq3h8eYXu372UFSdfZh0pfWxPKrwEkzLfJA5wQAKiiaWlbDVSUUnaV1M8EeE2ajbSoZfRgXiKyLDxy3qCD8AiWy1FIq_T3rTF7U-8BGm5qx_2ucDIFUwGkk/?imgmax=800" width="184" height="244"></a>Please pray for us … pray that Jennah will recover quickly and with as little pain as possible and that we will take comfort in knowing that we are making the right choices for her and that she doesn’t hate us for inflicting these procedures on her…</p> <p>BTW, I badly sprained my ankle 19 days ago. Ligaments are torn, tendons are ruptured. I can’t do yoga or run. I really, really want to run right now …</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com2tag:blogger.com,1999:blog-7723113705314427427.post-81464144907354922932013-06-25T15:20:00.001-07:002013-06-25T15:20:57.046-07:00April & May … Springing along<p>Look at me catching up on my blog posts! It’s really because I have so much to say about June … stay tuned!</p> <p>April was a hideously busy month! In addition to my new found love of working out, I also began volunteering more at the Seattle Children’s Research Institute. It’s where I can get away, but still do something that’s “good” to ease my guilt of the need to get away from it all. The month of April was also consumed with preparations for the annual Seattle Children’s <a href="http://clarebeckettguild.org/">Clare Beckett Guild</a> auction event, which took place on May 4. I happened to be this year’s speaker and had the opportunity to share Jennah’s story to a live audience for the first time. The event raised over $53,000 for Seattle Children’s uncompensated care fund … awesome!</p> <p>The auction also showcased the amazing work of <a href="http://www.soulumination.org/index.php/site/person/jennah">Soulumination</a>, an organization, that through photography, helps families celebrate the lives of children and parents facing life-threatening conditions, completely <em>free of charge.</em> Please visit their <a href="http://www.soulumination.org/">website</a>, but make sure you have some tissues at hand! Here is a slide (should have read “Aug 2007”… oops!) from a slideshow that I produced for the auction, which featured one of the photos from our session. </p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYkx9DRangZLLT_VsmFwAmJyVKC6PwLFvm7n61m6I_lYxgJULnTFgmPYCOz4rcToEDAsbqmN454LOivDYeAHjyHDGlOGecO2I7bcnY7Re7U2gt6KTY4AkUO6JgDpyEhMK8zhiXhN3ozoo/s1600-h/Slide2%25255B11%25255D.png"><img title="Slide2" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: none; padding-top: 0px; padding-left: 0px; margin-left: auto; border-left: 0px; display: block; padding-right: 0px; margin-right: auto" border="0" alt="Slide2" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMABo5smc5vF6vTcQNfAdPDHlXykTN0Xk06z7RPPahS6i8T4N66vKFOnr4lh_M4KHUb0qE_15NfoupfdAZJ8scT0icOpLJp_C7miZJ9Bl4mO9mFw6A2mPadIF-41r-bD1aeiSH22gzxDM/?imgmax=800" width="382" height="287"></a></p> <p>Among other news, Jennah has moved into her own bedroom!! Her fancy medical bed (the <a href="http://sleepsafebed.com/">SleepSafe Bed</a>) arrived in a record time of less than 3 months! These babies cost over $10,000, but we are so very fortunate to have insurance that allows us to afford this equipment. After the experience of living overseas and the painful attempt to get any piece of durable medical equipment, you will never hear me complain about insurance in the U.S. Jennah’s big brother graciously moved out of his room (he had designed the stripes and chose the paints himself) since it’s the one closest to the master <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCfv_22oFwVS8ITDw7a9fLkjXpXJKqAFHccgit3Q78u0hC4L0h2iNMyA_WTpbuy9LpYGbps00F77LOKT82jzmbfzzz5SS-DZq050LTgOE7BkfRbpGehwGleN2c0hkGHt47L-9OnPnb_SI/s1600-h/008%25255B6%25255D.jpg"><img title="008" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: left; padding-top: 0px; padding-left: 0px; margin: 8px 16px 0px 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="008" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIyR6eaTHsGITwAA9iGXSsal3iwEy2qcLYIBhLkIpCiPQWieLOQYOdufYZ9gFzt2jeDMWoWVGZqWe0GPtpGMldqRZGMZNk_QGJ8hthdgAU73rOn0TrWEpnXtvbKphJGPmzvBr7aJTUQKs/?imgmax=800" width="304" height="229"></a>bedroom. Quite honestly, when we moved back from Dubai, we never imagined moving Jennah into her own room! But Miss Jennah has surprised us once again with a very smooth transition. She began sleeping through the night within the first week! Darn it … her doctor may have been right about me being at fault for her frequent waking! On the other hand, I still frequently wake through the night to check on her … I don’t think that will change anytime soon, but I’m OK with it. Additionally, we did another medication tweak to help things along and she still wakes a little too early in the mornings due to one of her morning meds causing some gastrointestinal discomfort. We plan to tackle this issue during the summer … why wait until then? Stay tuned for the June update …</p> <p>April and May also led us into a very busy Little League season for both Bassil AND Jennah! Ironically, they were both on Mariners teams this year and we took Jennah to her first Seattle Mariners game … she had a blast! It’s not very well known, but within the greater Little League organiza<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOus6aIZTLpxwGos54Yk5vkhj3FOEPXyd68FipFi3U39c736136NOID1_czWqlnMRIEe0O8uErUooD59-AG4HgLFpRvuQrsEBo3O-xQ3GR0ftnnPLl1wWt-FulSwvWvYAcr1pt-yLfQQ/s1600-h/WP_000924%25255B6%25255D.jpg"><img title="WP_000924" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; float: right; padding-top: 0px; padding-left: 0px; margin: 8px 0px 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="WP_000924" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV3R5cApuHXJfSKYGCqxZS2TLK7YoxvJ5d0p3ZqOqJb92TFFfbxFOs4_xE1jEKVLEoXT3Weplx20yAiTzjEXPVsHJ194uZsaQs1RDLEIs3lte5d3O_PzKL6hAZckWg22x_X2T90VzcDWQ/?imgmax=800" width="246" height="327"></a>tion are <a href="http://www.littleleague.org/learn/about/divisions/challenger.htm">divisions</a> for players with special needs! Jennah played on the Challenger baseball team through Sammamish Little League this season. I say it often, and I’m going to say it again … we are so incredibly blessed to have a child with special needs! Jennah has introduced us to so many amazing people. The Challenger baseball team we joined had an amazingly enthusiastic coach and incredible “buddies”, who are other typical Little League players that volunteer their time to help the players with special needs. They help the kids bat, catch, and in Jennah’s case, run her chair around the bases. She LOVED running the bases and was squealing and screaming with delight! The “buddies” are just the most inspirational, wonderful, selfless kids … not enough words of gratitude can be said for them.</p> <p>And last, but certainly not least, Jennah’s uncle, Matthew, earned his Doctorate of Physical Therapy! Congratulations Na Matthew! Jennah is one lucky little bug … one uncle is a nurse, and the other is a physical therapist. I’m going to go ahead and credit Jennah with the positive influences on our decisions and the paths we choose to take. Some think having a child with special needs is unfortunate or a burden (yes, people have actually said this to my face …). <br>I beg to differ.</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com1tag:blogger.com,1999:blog-7723113705314427427.post-8824304069207109672013-06-22T15:04:00.001-07:002013-06-22T15:10:53.051-07:00Marching along …<p>I know, I know, I’m terrible at this blog thing. It’s unfortunately low on my priority list until friends start inquiring about an update and I make a blatant request on Facebook to help keep me on my blogging toes … so thank you all for continuing to follow us on this journey!</p> <p>My last entry was mid-February, so I’m going to try to write a recap for each month I’ve missed over the next few days … then hopefully we won’t end up with too much of my rambling and keep it a bit more interesting!</p> <p>After our successful swallow study in February, Jennah began oral/feeding therapy. It was a slow start, but she has progressed well since then and enjoys vanilla or honey yogurt, and LOVES graham crackers! She smiles at the smell of graham crackers and likes the <crunch!> sound when she manages to bite down. It might seem surprising that we would feed her graham crackers, but they actually dissolve quite quickly. She also likes tomato and red pepper soup! She still struggles a bit with thinner liquids like water, but she manages to cough and protect her lungs well.</p> <p>At the end of February, we went for a visit with ophthalmology. Jennah has been exhibiting behavior that seems like she is able to see more. However, the ophthalmology visit was scheduled to last nearly 3 hours and we were excused after the first hour. We know she has cortical vision impairment, but we kept hoping that maybe something would be triggered or rewired. Unfortunately, this is not going to happen … Jennah is, and will continue to be, blind. She is simply <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-TBsOzjXYmtyQ-ufA64oHuS7B9UQJpjiO3ouJMTyuOBrp7pwnUjBC3eor-mWlZxFRPFLo-ghviyibwx0paec8meYZpU-NzHbmseHDasrcOQwinxClWsbOuKONp7gvhSAc5kLu3xLyTSw/s1600-h/DSC_0090%25255B5%25255D.jpg"><img title="" style="border-left-width: 0px; border-right-width: 0px; background-image: none; border-bottom-width: 0px; float: left; padding-top: 0px; padding-left: 0px; margin: 10px 13px 0px 0px; display: inline; padding-right: 0px; border-top-width: 0px" border="0" alt="" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirgLyfM9CbTD7DlsyKO4iTrktkkykbid0-wzWOhdkXgr2MOz0PHsxU0LzznOww5kRhcu66c0Z9G8-1dV6x9BLSo-Xvxk0ThOINv5WdUyN1LzPm6hf3CgslNFQ3Cs9_DajzQCCDu2PqrgU/?imgmax=800" width="233" height="240"></a>incapable of learning how to see since that part of the brain (the occipital lobe) has been severely damaged. There is actually some research going on about correcting this dysfunction, but it’s not going to happen anytime soon. The doctor was very apologetic , but I’m really OK with it. It was disappointing, of course … we <em>want</em> everything for our sweet Jennah, but we can’t <em>have</em> everything. It’s not a loss because she never had it. As one of my very wise friends said, she’s made leaps and bounds this year … vision just isn’t one of those leaps! So we’ve moved on … it’s not that we’ll ignore her vision altogether, it’s just not something we’re going to focus on or take time out from her strengths to work on. </p> <p>Speaking of strengths, I was becoming physically weak. Jennah has really grown these past few months and measured over<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh20GDEyUBjk6-EIs9HjLeiJqr5929R12pl_LiEHOtd8Tf69lp-mjTSmvQJkpkgaCfT0Riggq2Bi6qhIj2rj-5bD2l6I0qzuR0srZIgBp84KIoByazkGvw-nBE54_uqewNm4aZEUnuea4M/s1600-h/BWike%25255B3%25255D.jpg"><img title="BWike" style="border-left-width: 0px; border-right-width: 0px; background-image: none; border-bottom-width: 0px; float: right; padding-top: 0px; padding-left: 0px; display: inline; padding-right: 0px; border-top-width: 0px" border="0" alt="BWike" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixd9zydf19eGYGq7MwNGNOXjtAjPPx5ht04gel17IGEuhwVk_sCmFz1vxkPWOntzBngtE4UfOZJ2M7Um14QUCSR50CPUY7jF_pwrss_d_NJPOFHryURpe-qnlM1tidLheuC9_RRRbOZ3w/?imgmax=800" width="364" height="484"></a> 3 ft. long and 40+ pounds. When I carry her, she’ll either be limp like a bag of rice, or do the dancing robot. My neck and shoulders were constantly in pain … I was getting tired and depressed. At the end of February, I decided to join the gym and purchased the WIKE, which is a trailer/stroller/jogger for kids with special needs. It has been awesome. I dare say that I feel and look great! I am determined to take Jennah wherever I can, whenever I can. I’ve started running, weight-lifting, and doing a lot of yoga. I dream of running a half marathon with Jennah some day. But for now, I will train and build strength. I need to stay strong for her, physically and mentally. So in March, I ran my first race, the 4-mile Seattle St. Pat’s Dash…liberating.</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com2tag:blogger.com,1999:blog-7723113705314427427.post-50540131601523942472013-02-13T10:19:00.001-08:002013-02-13T10:19:10.406-08:00The Swallow Study<p>Ironically, this is Feeding Tube Awareness Week! A swallow study is often performed in conjunction with an assessment for a gastrostomy tube (g-tube). This was Jennah’s first swallow study since 2008. It was nice to see the same speech pathologist that worked with us nearly 5 years ago. I recall Jennah was seated in her infant carrier back then and had several seizures during the study. She choked, screamed, and spat up. In the months following that first swallow study, she would regress from the seizures and lose her ability to suck and swallow. She eventually fell off her trajectory on the growth chart and was dehydrated and malnourished. At the time, we felt that we were “giving in” to the g-tube. Now we realize that it has not only given her (and us!) a better quality of life, but it has saved her life.</p> <p>As I wrote in my last entry, Jennah has been making great strides. One of her accomplishments has been the visual cue of lip-smacking (for you seizure-savvy folks, we’ve confirmed that this is not a seizure <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-winkingsmile" alt="Winking smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh420_0DAmrqFFvv1Cv-3boi2oJEpuGweiqjXfWufzJ5uEif0nlSXfHBrzs4xw6nJyu_iuVx4n1X6hD8p_7fOimjexMCz9O1Oeo9yTATW39IRnhtSW43xINap2P8_EKYkV3-0LFgC1Gpss/?imgmax=800"> ) when she has dry mouth and she is maintaining her secretions (drool) quite well. She also seems interested in the smells (although sometimes adverse when it comes to Thai food!) of food. Of course, we strive to give her everything she desires and to enjoy all of the great things life has to offer, such as the taste of really yummy food! </p> <p>Cue: swallow study! We are now in a place where we can consider working on Jennah’s oral motor skills. She will never eat full meals by mouth and we have no intention of removing the g-tube. We have accepted the wonders of the g-tube. We love the g-tube. We embrace the g-tube. Celebrate the g-tube! OK, you get the point. We do want to let her enjoy the taste of food and perhaps do an even better job with her secretions. What’s more is the possibility of increased vocalization! Jennah has the cutest, sweetest voice … we want to hear it more! Of course, there may be times that we won’t want to hear it, let alone teaching her to use “inside voice”, but we’ll tackle that if we ever get to that point. One day, one skill, at a time.</p> <p>What is a swallow study? It’s known as a video-fluoroscopic swallow study (VFSS) or modified barium swallow study (MBSS), and they make her swallow a bunch of barium (makes chalky poop) and video x-rays are taken during the act of swallowing. The mechanics of swallowing are crazy complex and amazing.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn49A1GAImeTkhMXpzdlCzKufKcre-JGUbTGM5ashU5ybX3Ii6Bxf_-UsFhK2m54KmmZeLbfgxwcy6-v6lfLALtwFesNtnZr9dzKnxbpb1_ju6UUGImml8rqmqdi9S0kTp9znfamh6P2E/s1600-h/WP_000803%25255B12%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top: 0px; border-right: 0px; padding-top: 0px" title="WP_000803" border="0" alt="WP_000803" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkbGEzHBWkU9WYlLYdnLpntZSC51HhDvGA-_ZVJBKnsUItMTExGtqudx7pmGGgT5ZVYi1dsc1lSBK7oMp51I4597ts8PnzmWYE5NGaRt8o4XHCG31NCWDRNAyIqEkVIlEMdn9MEU5pI_0/?imgmax=800" width="180" height="240"></a> I’m not going to go into the whole science of it, but they basically make sure that the liquids/food goes down the esophagus and that her muscles are able to close and block off the trachea quick enough to protect against aspiration. We mixed barium into some strawberry yogurt and she swallowed it like a pro. We then put barium into water, but gave it to her only a few drops at a time from her bottle. Again, not much of a problem, although delayed. The water was room temperature and she couldn’t “feel” it in her mouth. Next, we gave her the barium from her cut-out cup. This would be the “challenge” test. I gave her more than usual and she managed it pretty well! There was the slightest bit of a “leak” into the epiglottis, but she was able to repeatedly clear it out. Yay, Jennah! </p> <p>So we now have the green light to begin oral motor therapy and to feed her by mouth as tolerated and accepted. I’m going to share some sweetened condensed milk with her. Jennah is glowing … not just with pride, but with the massive amount of radiation she’s gotten from so many x-rays! Between CT scans (no radiation with MRIs) swallow studies, gastro-anatomical studies, 10+ hip x-rays, upcoming spinal x-ray … I digress and know the amazing body recovers, but you gotta wonder … <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-winkingsmile" alt="Winking smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh420_0DAmrqFFvv1Cv-3boi2oJEpuGweiqjXfWufzJ5uEif0nlSXfHBrzs4xw6nJyu_iuVx4n1X6hD8p_7fOimjexMCz9O1Oeo9yTATW39IRnhtSW43xINap2P8_EKYkV3-0LFgC1Gpss/?imgmax=800"></p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com6tag:blogger.com,1999:blog-7723113705314427427.post-50282827806300546942013-02-08T10:24:00.001-08:002013-02-08T10:28:37.991-08:00We love it here!<p>I know … I say it every time, but I’m a terrible blogger. I don’t know if I even qualify as a blogger at this point. Nonetheless, our dear friends are inquiring on Jennah’s progress and I hope that others who may be beginning this challenging, yet incredibly rewarding, journey will find solace and support in these words.</p> <p>I initially started this blog as a way to express my grief, rants and rage. But as the years passed, grief has turned into acceptance and extreme pride. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhTsqFg9pDAf45yEj3fFUdkzr7k4PqNDCf1yMBLdeygLywWxhwekgmPSw8__E6_phTdHHZDBTmXViqdKebsXmrzx08Fw3L9BRdeMJSXUXD_8s-aKbxqdQ882e_U08BANKV6v77ci8lG0E/s1600-h/J_stand1012%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top: 0px; border-right: 0px; padding-top: 0px" title="J_stand1012" border="0" alt="J_stand1012" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqAdIOekblPz2tEywPe7bks1zPSkRsySXY4M87oMb7lZdd3ehGsfN0h-6X8_3DpTVVa3WRRSGKDQxefsOD2tKECGuj1uv02ts7bqrLWbvZIpO-DT3x2VT3l6ZW2_ldTNNZQMMbnwAM1O4/?imgmax=800" width="184" height="244"></a>I do get saddened when I look in the closet where cute dresses are hanging in a row … dresses that I never get to put on Jennah because they only get crumpled up beneath her or twisted up in her feeding tube. We’ll never have a picture of her running and twirling in a breezy little spring dress. Instead, we get proud pictures of her in a standing frame. But there will always be something supporting her, or someone holding her up; I worry that she can never truly be free. Perhaps it’s better to think that she’ll never be alone; she’ll always have someone by her side and always be loved.</p> <p>Jennah has made amazing strides since my last post. Most notably, she is going to school 4 days/week and actually <em>likes</em> it!! You may recall that preschool last year was extremely challenging. Jennah was often ill, spitting up, crying, and having seizures. However, we had a very productive summer with medication adjustments, a lot of horseback riding, and the continuous feeds. She no long spits up and is able to control her drooling much better now! Her seizures still pop up from time to time, but they are overall well-controlled. I’ve been saying it a lot, but we really haven’t been here before, and you know, we like it here! Life seems almost “normal” and dare I say, some days are a little bit predictable. I take Jennah to school in the mornings and can actually get a couple hours to myself! I do have the phone near me at all times and dread getting a phone call during yoga or if I’m further away in Seattle, but so far, it’s been good! I don’t know what they do at school all morning, but she comes home smiling and dancing every day. I do know that the teachers, therapists, and staff at her school, Cascade View Elementary, are amazingly kind and supportive … we are so fortunate to be where we are.</p> <p>Our last visit to the neurodevelopmental clinic has resulted in a very busy, and somewhat stressful, month! It’s been a long time since I’ve had to juggle so many appointments, but this is a good thing.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5tSB2E75ul11kuMf2J5Z9iTXlA_fnvBxSkp8p7oDCYjWXkfskI2lzWGGBg1bYABeg971ezfl5yY1NCwwZrXqZWpRNzNbpD8N5lQmFisQtTH-a9vOUlt8u8bJKULCDjIuirl2P1mujvII/s1600-h/DSCN4122%25255B3%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top: 0px; border-right: 0px; padding-top: 0px" title="DSCN4122" border="0" alt="DSCN4122" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBcTO8ifPmrM5osFLFcuTq33VdAwA0Uk7HBCTa9Eq-QC8x894qwK6yrxDURVFbseR8EYRdgWdEl1FsQYlNjvBtXPJ1nmf6BjVya25bNiqYscOo6BHxZJe6SJz6VVq9ZlbL3QMB-jWOq_8/?imgmax=800" width="244" height="184"></a> We are going to revisit her oral motor skills and do a video swallow study. The results will help outline a feeding/speech therapy plan so that Jennah may be able to enjoy a little bit of social eating and perhaps vocalize a bit more. We are also going back to ophthalmology. This one is very exciting! We think she is learning to see a little bit! We’ve been noticing some gazes from her and her school had a vision specialist visit and confirmed that there is definitely something brewing with her vision! So we’ll want to see how we can help her reach her fullest visual potential … go Jennah!</p> <p>And lastly, people are trying to get me unattached from Jennah’s hips. This piece is for me. I can’t seem to leave her side. I rarely even travel more than 10 miles away from Jennah’s school when she’s there. I know I have a very dependable support structure, but I can’t let go! So … one of the first steps for me to overcome my addiction to Jennah is a “durable medical equipment” assessment. The doctors (and my husband) want to move Jennah out of my bed. The biggest challenge with Jennah right now is sleep. It is common for children with cerebral palsy to have difficulty sleeping as their muscles tend to get tight or their brain is always on fire since everything little action that we take for granted, like sleep, is that much more challenging. However, Jennah can now move around and reposition herself better in her sleep now. I no longer need to wake every two hours to rotisserie-flip her. Am I to blame now for her restless nights? Me? really??! Oh yes, I am dreading this appointment for sure! <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-winkingsmile" alt="Winking smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3XmWkqjENmfKwhg76loYyV23uUMmQn4526DR_PhsOM4Bd_EVOg5a1TdPjZPuv8kX6EbcK5jeDiH2Ak1cGVpwJPYV69jyuE0W2xAizEIfLbQXEWtRsxBBFN1Hbktr-7VL6kj3XgweRju4/?imgmax=800"></p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com2tag:blogger.com,1999:blog-7723113705314427427.post-7689628634830105832012-09-20T11:43:00.001-07:002012-09-20T11:47:56.615-07:00Miss Jennah is 5 years old!<p>First, I’d like to thank all of my readers for your friendship and continued support. We have several new friends who have started following our blog and many have requested an update on our little Miss Jennah. I haven’t blogged in nearly 5 months, which is kind of a good thing, because it means I haven’t been totally depressed or had much to complain about! But I do apologize to those of you who have long awaited an update.</p> <p>A lot has happened since spring! Jennah finally returned to preschoo<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPrS8JEqeFlckm1iDL49pjjJsW8H5px7BdD6D-IStx6TjwrfD0XSK5bv5VgONwfAKJSoc60sLWz_x1HzutMC5R0WONxaWHbHamDjgfg9GydNQWdYc98PwSTA5hwt68t6ETJaHegxqQS1c/s1600-h/WP_0003467.jpg"><img style="background-image: none; border-right-width: 0px; margin: 0px 17px 0px 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="WP_000346" border="0" alt="WP_000346" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKA0DgTaC1msiXwFRVlF7BfocoM-U03RnXDnvv35uUWj00JWC8sEKp91_ffD7SaDZPkbL1oaPjVKgEh8Z0OXdgjV-EA3nabMPRbgw_5-p1jVJFPHQUc2k9UETttWYbhqxt-nV9S_ZTCzQ/?imgmax=800" width="180" height="240"></a>l after her brief sabbatical, just in time for graduation. Of course, she had a meltdown during the ceremony and we had to leave early … pretty much sums up her entire school year! Nonetheless, we will greatly miss her teachers, assistants, and therapist at Phantom Lake Elementary. They were all extremely supportive and put up with Jennah’s bad attitude on a daily basis. Our preschool experience was invaluable and I feel so blessed that we were able to come back to the U.S. and provide Jennah with these opportunities.</p> <p>We started the summer off with the Northwest Run/Walk for Epilepsy. With the <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzmSeuVVNJzYj4Hij4yxIbJPXee81SHkx0Q5FSMwR1DFyvanz7b2R1Rtb51Cfv8aXQy1IK0BaBjsnMoC3wLCYCLvfrNYFwmrZ2mpT-o7bLpBvhGZEw8_k48e0Ia-SYTttLuS7IZUVmxX0/s1600-h/DSCN4026%25255B3%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top: 0px; border-right: 0px; padding-top: 0px" title="DSCN4026" border="0" alt="DSCN4026" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiosyZoX_aRhRQP9fggY9svedK1KAOjl7b_je4aqSytkLKkTcjy9z4rkwhyphenhyphenKEdRfWzapoDixZ1kjcdpO9gWuJKCngWB1JfGIiFJwR89p27hkDVSaxdDpl8Fb_IO5j496bVA0vpEqFDUIAw/?imgmax=800" width="244" height="184"></a>support of some really great friends and Snoqualmie Springs School, we were 2nd highest non-hospital team in Seattle raising over $2200 for Epilepsy Foundation Northwest!</p> <p>We spent the summer at home as all anticipated travel plans were cancelled after our hospital stay in March. We wanted to allow Jennah to stabilize while <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM7P4GtsqYz2DV9WMB8eq7N11NjRIt-74xjTJf2SqxIRNSLRaqa1zATX0ecKni6JBEJ_JnTWqQBnCBncHsNTtYvu17hfLhmMztxLXKW1NymZ1g9hvItcR4UXpUmmCk5hbscK1mkDQehzs/s1600-h/WP_000308%25255B8%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; margin-left: 0px; border-top: 0px; margin-right: 0px; border-right: 0px; padding-top: 0px" title="WP_000308" border="0" alt="WP_000308" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvFOJCMIZE7p3J3lOFY1P2XyrjTe_Pa5T5zQbGWCWypeCiiPawMHs7pnWB8DZtD1jOzssxuWkVzZR1b6PjDlbNdu-RMSSGCx1tsPTlUHGr9tVQUZgmKEYIBVA1A9TqqTXNnrIqWlT0CgE/?imgmax=800" width="184" height="244"></a>we made medication adjustments and introduced a new medication, Baclofen, for spasticity management. Spasticity is basically her super-tight muscle tone, especially in the lower extremities. We want to treat this to avoid the severity of the impending scoliosis that is already occurring, and also to avoid deforming her bionic hips that were reconstructed only last year. It was a busy, but very fun summer, as we entertained friends and family from Dubai, Thailand, Texas and California! Jennah did have an increase in seizures with the summer heat, but overall, we were very successful in getting a good balance in her meds and have seen some noticeable improvements in her muscle tone.</p> <p>Jennah celebrated her 5th birthday on August 1! I am so proud of our Little Miss Jennah … she has endured so much in 5 years: a complicated birth followed by 18 days in the NICU; 2 CT scans; 3 MRIs; at least 20 x-rays; approximately 10 EEGs, 6 of which were 24-hr monitored stays in the hospital; a VEP confirming her CVI; 2 swallow studies; a g-tube placement (3 days inpatient); two emergency room visits, both resulting in hospital stays; a 3-day ICU stay complete with intubation and central line placement following a grand mal/status epilepticus episode; a 14-day stay including a PICC line placement; a bilateral hip reconstruction (3 days inpatient) with 6 weeks in a full-body spica cast and 6 months recovery; and countless other pokes, tests, assessments and clinic/doctor visits. With all this, I count our blessings that this is all that we have had to endure. There are many others who have to go through so much more, those who have to use that CAP badge at Seattle Children’s much more than we do. </p> <p>I am happy. Truly happy and feeling so truly blessed for how well Jennah is doing and for all that we have. As always, I am so thankful for my friends, family, and all those who support us and pray for us. Now it is my turn to return the support and prayers to a dear friend who is in surgery as I type. Also, to the moms of other children with special needs who I know are not doing as well right now … God bless you and give you all strength. Have faith. xo</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com6tag:blogger.com,1999:blog-7723113705314427427.post-78100077683816599862012-04-26T10:39:00.001-07:002012-04-26T10:42:34.993-07:00Preschool Drop-out<p>… at least for the time being. Taking Jennah to preschool was the one most stressful events of each day and it’s only gotten worse. On the day of my last post, “Defeated”, I took Jennah to school and stayed with her the whole time as it’s now required that I stay, since there is not a full-time nurse at that school … or transfer to a different school. During circle time, she slept. Then she started seizing. I was already in<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsKK7X7bI5bbMlFEFd9lAyOz8ctrxPFzHMr-OztfQodjJnJsk2D87oVnF1D-huwPMucZAuBVICUE6YfqlICSTr8QCImThLx8007TYW4nyzJ7Vv9PDVab7acxYLtLPappBJw7I3RzxwbYo/s1600-h/WP_000127%252520%2525283%252529%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top: 0px; border-right: 0px; padding-top: 0px" title="WP_000127 (3)" border="0" alt="WP_000127 (3)" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnBk2Tg5ScmXZ6db_zhXMsTuseHclezRmUOHFlcRbdtTbcu3SndTOuMkqdzZ6Nm6MOGXMWh-49Phq1c_4ceOgvKWPivS8j3w_MIuGPfF2CeLphWJopp-uhcie-aRPzwBKxiNzplr3X6l8/?imgmax=800" width="200" height="260"></a> a dumpy mood and could do nothing more than roll my eyes and think, “really?” I asked the teacher to get the Diastat ready, just in case. She knew exactly where it was kept and even got out a disposable mat; she was calm and well-prepared. This was reassuring. Luckily, her seizure ended in less than a minute, so no further intervention was required. Unfortunately, the seizure pretty much knocked her out for the rest of the day, so she slept through her therapy session and the rest of the school day. Great. We kept trying to go back to school, but she just sleeps the whole time. If she’s not sleeping, she’s screaming because she wants to sleep. If she’s not screaming, some other child in the class is screaming, which makes Jennah start screaming. It’s madness and completely unproductive. We take her to school for the social interaction and therapy services. But we’ve been accomplishing neither and just distracting her classmates from learning. So unless Jennah starts waking up more, I am not taking her to school.</p> <p>We have also been seeing an increase in Jennah’s seizure activity. We are still trying to wean off of the phenobarbital, but it’s becoming clear that she needs something to replace its effects. Therefore, we’ve added yet another new medication, Onfi (Cloba<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKcqrw_yFdPfFh09WTu7WupstqQisXhQM_MEB90qp4erQkBhtnoaUwGlvovOzCTgLFnJmGGgzOoQNlzvrzfz3XYqP4PbNchzbH3Xi49kAqryxj5ArM8dYw2TMe0R8AL1wipCz1QVnJzmI/s1600-h/DSCN3914%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top: 0px; border-right: 0px; padding-top: 0px" title="DSCN3914" border="0" alt="DSCN3914" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOT9ApdeIoBwWRgsZRHJGFKynU9L3c5wJ0HMvMudzRzwddi0Z6o55jjHZXYN-fdmrNZrmR1RwYRzp4kt9UK1zc4ZuitHijaTh6wo6jJdxucsnevMHKtGxVIUxdrJs1SUZcKQ1PfkYy0vc/?imgmax=800" width="184" height="244"></a>zam). It’s newly FDA approved and we are lucky that our insurance will cover it. It’s only been a few days since we started this new med (she is also still on the Lamictal [Lamotrigine]), but we haven’t seen any seizures … so fingers-crossed!</p> <p>On a more positive note, we took the kids to Great Wolf Lodge during Spring Break. Jennah did cry a lot and vomited a few times, but when we got her into the water, she was just thrilled and LOVED it! The girl just loves water … and the obnoxiously loud white-noise of the generator in the waterpark <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-smile" alt="Smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPSyIDw5NUphdPjTGGPJ7XLQWlRy2hYNl8WpJrocOeZwfKTrQdnfY1ZTDnSR9gqaqktAUiJPigtiMkOtNOJ0C6W7kfZZO-jtB1EfkjAkm-mq87hxGCMwNf7TiHXRdCcK96F6vC5JKKeU0/?imgmax=800">.</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com2tag:blogger.com,1999:blog-7723113705314427427.post-64243846083542509972012-04-03T09:30:00.001-07:002012-04-03T09:30:31.278-07:00Defeated …<p>I’m admitting it … I wish Jennah was a typical child. I wish she could walk, talk, and play with her brother and sister. I wish she would go to school and give me 2 hours of solace without worry of her crying, choking, or seizing.</p> <p>I’m tired. I don’t pray, eat, sleep or exercise. I don’t play with my other children. I don’t even talk much to my husband anymore. All I do is carry Jennah, drive, and yell a lot. </p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com3tag:blogger.com,1999:blog-7723113705314427427.post-87131344576486714622012-03-24T12:39:00.001-07:002012-03-24T13:04:32.587-07:00Post-hospital update<p>We were finally released from Seattle Children’s hospital on March 13 … 14 days after our admission, 16 days after our first visit to urgent care, 30 days after our first visit to the doctor regarding her “excessive spit up and acid reflux”. It all started from what seemed like a little cold. It reminds us of how the little things affect Jennah so much and how much harder she has to work to do the “normal” things we do, like recover from a cold. These kids are so special and fragile. We learned that a little 2 year old friend, whom we never had the chance to meet, but we anticipated the meeting since we would have back to back therapy times … he very sadly passed away from what seemed like a simple cold. Tragic, scary and so heart-breaking. You hear of people dying of “complications from a cold” … that could have been us.</p> <p>It’s been 10 days back home and we are finally back into our normal routine, with the exception of returning to school, which we hope to<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia91IUyzgSKzhNwEvXxUhNGXZCxMiFRKqVdw6FowaJ52N2GzuKRbkHFa5IxAxHlOgy4JbRpEeyKkkUGIz_vXcyMqUY_OjUbMADOpAEcuPzQka-IthW1egXXgx2GBYED-kOBVXfShqjYBk/s1600-h/DSCN3880%25255B4%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="DSCN3880" border="0" alt="DSCN3880" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGK9L9Nzbv1R7iYoIvBJ9SiKXDqKH_HGA89GA_tAFDl3tGJXmLzXq1cOJdkKllht66-01CXNUjrTGUmnLaCriU54BFHPzBdtwMkqhQgbkcY1eyjQqFuDTj-lRNH0qCmGIq1J3i6_t-n24/?imgmax=800" width="199" height="150"></a> do on Monday. With Jennah’s increased number of health concerns, we need to reassess her school schedule. We did manage to escape the hospital with only a feeding pump … no IV or PICC … YAY!!!!! It was such a relief to hear that they had canceled the home PICC care teaching appointment before our discharge. Instead, I only had to learn how to use our new fancy continuous feeding pump. The PICC line was literally ripped out from her arm (picture above). It took her a good 10 seconds before she realized what had happened and started feeling the burn and proceeded to screaming.</p> <p>We’re up to 70 ml/hr on her feeding pump now. She used to be able to breastfeed and take a bottle. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV2OfA9djO0dhbhNr1DjKsCmEud8cysAm88LdduhHDaqJDh4o5F_eFIA5WuIPGp58oY35ZxaOFEDa7G7LIJ-eNDDHRt4w_lT12v4ckD66xqFfhNWa2FuCwHEhU3OXg_eMvATJb8lLyvmM/s1600-h/DSCN3885%25255B3%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="DSCN3885" border="0" alt="DSCN3885" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNUiJWSm_RS-fdqYpBItFVmZfv-8Vc_MAeoklrN1o2VNznFB4TN5oe11q02zCikQa7oR_qLXs-MRbRDlpVeAlimQeRvmmdDc0jtSLF6hzhsmBYVmMCi2jec6CkjvIy7o85kaiE91jajCg/?imgmax=800" width="244" height="184"></a>She used to take 180 ml boluses in 15 minutes. Now we’re on a feeding pump for 18 hours a day. Not a good trend. But it could be a lot worse and it’s not terribly inconvenient aside from trying not to trip on her tubing when we carry her around or go out. More gear to carry around, but it’s all manageable. She’s getting all the nutrients and fluids she needs. Most importantly, she is happy and very comfortable. </p> <p>Of course, we’ve added a couple more medications to her regimen and we’ve had to reassess and recalibrate her seizure meds. We’ll be doing more frequent blood draws to make sure her meds are at a therapeutic level and that her liver is not completely shredded. </p> <p>I want to say THANK YOU to everybody for their messages of encouragement and prayers. I am especially thankful to those who came to the hospital to visit: mom, Mark, Hubby, A & B, Cassie, Kaye, JennLe, SChai, AArayas, P’Bird, P’Au, Kristi, Kali, Yujin, SK, JamesSu, Trish, Natalie, Thomas, and Holly. I really hope I didn’t miss anyone! And a special thank you to the nurses, doctors, and staff of the Rehab unit … here’s the card we made them:<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ijH1LUOlTRng-rPBxY1y84WKraelAUgHi2c5Bh5_UMpgSGTa6sIIRi0TUNujhDwnGMA1lBhu2YIZVAgz_sfVVVlQ3x2ydTBVaJo4GZFmZiaWHWdGYTlbDt6wVsWfLrPzmwMfwLNWSsc/s1600-h/hospital%252520thx%25255B6%25255D.png"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto; padding-top: 0px" title="hospital thx" border="0" alt="hospital thx" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO5yT3lY20rKYONFM5ZeR1rvYd0pojyoaX-rBRBJ6YO0FCeq6SFlQfu8Uz4Z8-ji4sEgrsR-Y-s4zOMhL26XyXAYgMImKdQ7SdPfaVNxXWm1c_Qmu4RhvgeOH_jSUBhOzE8jv0_80nK3Q/?imgmax=800" width="548" height="337"></a></p> <p>It all started from a simple cold. As I type, Jennah is sniffling and snorting from yet another cold that she just caught a couple days ago. Colds and little bugs are a lot scarier now. And yes, she has had massive spit-ups (I don’t want to call them vomits just yet). <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH90ccd4Mj0hS9f9faInVjYRP4fQCYlP753kKi2sVTAD3LeB8h-O2Z4T9WhF_YI0RfPy0Ur3CDNBbeAwB0_Z0IZ6zxhOJZd9MpaMZpmrvV8P_42Sya9ayk8cKE6evrlwhZhFX0g_dLNvk/s1600-h/DSCN3881%25255B3%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto; padding-top: 0px" title="DSCN3881" border="0" alt="DSCN3881" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkRc6eeKWmASxgfDOfC9B3vhE8Ny5MEpFU6FooyYxE0ajPUZ8zAW-HYOAZ5pGz0Z7m2X8n3OLBGJqarJaf8qSr3408zEzUVkGjYilwXJY66de5lEDcY-m3_Ocv-j529P2t5m9wdOQYeyQ/?imgmax=800" width="244" height="184"></a>We can only hope and pray that it doesn’t send her back into the cyclical retching pattern … just hope that her brain knows how to control those smooth muscles. It’s the little things. In the meantime, we’re just happy to be home, watching TV.</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com1tag:blogger.com,1999:blog-7723113705314427427.post-70648650634935347532012-03-09T13:18:00.001-08:002012-03-09T13:18:38.899-08:00Day 11 - The most depressing place on earth …<p>We need to get out of this place. It’s nasty. There are germs and microbes that I don’t even want to think about. The kid down the hall with MRSA went home this morning … although I’m assuming she no longer has MRSA.</p> <p>Then there’s the cancer unit. The world-renowned Seattle Cancer Care Alliance, Mary M. Gates Cancer Unit. Huge signs on the entry doors read, “STOP! Do not enter if you have cold or flu symptoms … etc, etc”. It sits right in front of the Train elevators, which I use multiple times a day. More often than not, a cancer patient wheels or walks out of the unit. Most are bald, which means chemo. Some have hair, which probably means radiation. The ones who are swollen up beyond recognition may have lymphoma. Many have NG tubes up their noses. Some are too frail to walk. Others are in street clothes, excited to leave and perhaps in remission. They range from toddlers to teenagers. It’s heartbreaking. It makes me think of the hell my parents had to go through when my brother had cancer. He was bald, frail, and had an NG tube. He walked in and out of the hospital until one day, we all walked out of the hospital without him because he died. I hate the cancer unit and I wish I didn’t have to walk by and be reminded every day.</p> <p>There are some really, really sick kids here. Jennah is hardly sick in comparison. Code blues are called on a daily basis. And those don’t include the codes that are called within the ICU or cancer unit. I count our blessings that Jennah is doing as well as she is. We are also thankful that Jennah is not cognitive and totally clueless as to what is going on. Many of the kids here are terrified and confused. When we were in the surgery prep area yesterday for J’s PICC procedure, there was a young man, maybe 11 years old, who looked very brave and very tough, but very sad. I had seen him come out of the cancer unit a couple hours earlier when I was running out to the cafeteria. I heard the nurse tell another to take his parents out to get a pager because the boy needed a moment. Sure enough, as the parents left, the nurse (a manly male nurse, btw) took his hand and said, “you can cry now.” And so he did. I had to pull the curtains before I totally lost it myself. I just felt so sad for that boy.</p> <p>It’s frustrating that we’re still here. After all, Jennah is far from being as sick as these other children. We’re just taking up a whole private room. But no, they won’t let us leave. And a care coordinator just signed me up for TPN teaching for Tuesday. WTF??? I thought we were going to get out this weekend …</p> <p>Plan for today:</p> <ol> <li>start Pedialyte and try to tolerate 35 ml/hr without retching.</li></ol> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com4tag:blogger.com,1999:blog-7723113705314427427.post-70384611197094467512012-03-08T12:57:00.001-08:002012-03-08T12:57:38.172-08:00Day 10 - How much longer?<p>Yesterday’s tests, an endoscopy, sigmoid colonoscopy, and an MRI, return all negative results. This is great! Or is it? So we still did not have a clear answer or diagnosis to her vomiting. Nonetheless, passing these tests allow us to start a medication, cyproheptadine, which essentially puts a hard-stop to the vomiting at a neurological level. </p> <p>So last night, for the first night in nearly 3 weeks, we were vomit-free, retch-free. While we are all absolutely ecstatic that she has some relief, it’s not completely satisfying since we don’t have a good diagnosis. There is a disorder, cyclic vomiting syndrome, which is a type of migraine that presents with Jennah’s symptoms, but the criteria for diagnosis do not precisely match. The doctors also seem to be stumped, although the GI doctor still has some options he wants to consider. I ran into Jennah’s hospitalist (her primary inpatient dr.) in the elevator as we were on our way to get the PICC. I was very excited to tell her that she didn’t vomit last night and said, “maybe we’ll be out by the weekend!” She gave me the weirdest response, which I’m pretty sure meant, “don’t bet on it.” Boo.</p> <p>Not sure what the plan is with this medication, but we want to get her to start eating again. That’s our ticket out of here at this point. It’s going to take days to ramp her back up to her 32 oz/day feedings. I imagine<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaVB7ZgpesqF523LjTPoRC3FvIlMNVt_u4XiirfLG7cVYeReT4sqWhgtsK0evzptSptRvoQMTTRtrDRJI9iFhhqJaOGXdyxOptIRq7wltoohsnhsKKlYV0RiIFOPA84anTqaNydwRHjyk/s1600-h/PICC%25255B2%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top: 0px; border-right: 0px; padding-top: 0px" title="PICC" border="0" alt="PICC" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1-G-b9V-B8Xa3JnkjAAhxZ9zVFxHO1O12cLSPSZT-e_EmCZv3Qyxc8P9ZyxBVh0AlYOQL6LWdrbEu2Ci-tVuroROZZCGaszMQKlp1rZnmQ_ASiFmNe-Z9UgyPE2EKGKApFYxkA7isXD4/?imgmax=800" width="184" height="244"></a> they’d let us go if she starts getting comfortable with about half that amount. Maybe. As I type this, Jennah is under general anesthesia getting a Peripherally Inserted Central Catheter (PICC) for her fluids, nutrition, and any meds offered in an IV form. It’s inserted just above the elbow and leads through the subclavian stopping just before the heart. It will be a relief to no longer have IVs. She’s had 4 IVs in the past 10 days (not counting the one at urgent care 2 days before our stay here!) and her veins are bruised and swollen from the large molecules of the parenteral nutrition solution.</p> <p>Plans for today:</p> <ol> <li>get a PICC</li> <li>wash hair, sponge bath – haven’t been able to do this for the past 10 days due to the constant retching and puking!!</li> <li>start taking small amounts of Pedialyte through the g-tube.</li></ol> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com0tag:blogger.com,1999:blog-7723113705314427427.post-32097374880136613712012-03-06T11:15:00.001-08:002012-03-06T11:15:46.034-08:00Day 8 – no more poop<p>We can all stop praying for poop now, because the fluoroscopy imaging yesterday showed that her bowels are free and clear. It also shows that her lower digestive system, from her g-tube/stomach down to the caecum, all functions correctly. So that’s good news … right? <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBo55OoZ0Ao9_B0KGcFJr1zmcFZIgFCL6bBxwRUzSIqB5GWlcWNPyUUbBtNTpmlkmxpbS4ouoRSZjUD-2b37Aiwu_0Ru8RybMNFCraCOfUOKSYiauWveULKvearaOzbH-6dPyDhylTL9c/s1600-h/DSCN3855%25255B4%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto; padding-top: 0px" title="DSCN3855" border="0" alt="DSCN3855" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOcJJFLhEO9DoLvB7rfkZ3hp6soEm7opPFqhIRaRGFoWVXwtlpSNoWcC1wv7JVW_idZY34tQJumkCERcyzIi11frYuC7P3QqCBsdldAmB2bnrSN_pcyroMxJppQIV-zcM9KDZ9ZmVLQK4/?imgmax=800" width="240" height="180"></a></p> <h6></h6> <h6></h6> <p align="center">Parenteral Nutrients (PN) + Lipids (white bag)</p> <p>Of course, the fluoroscopy test required 50 ml (< 2 oz) of barium to be pumped into her stomach. It’s like a single gulp. She used to take 180 ml of formula in 15 minute<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikFAzkW3tnBfkl2ig1CUD7sZ1CeNo2il13l-BAKEsHB1kbLoyVnAAIPF4yub_bzZ2oh-pzKb238n2zwLuC4Wos8zenbAOvjbEDlPtQbrElNGMU-0QVdcWzSVPxJqwf3mYPAqUaqGyo5RM/s1600-h/DSCN3865%25255B4%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="DSCN3865" border="0" alt="DSCN3865" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMCLsNxd-XAMS3cQyZepGvFVGuLO_IN9AnYVn-c-yy6ZPRW4r6rhSYzFqMGeThu51ObBihK7Qt5TsTHGBM-LsETMwE1VbeBeS0bPj4-uD6AEt7fgqx5vZZZdWVI52SG6ohyEF0rJrPJZc/?imgmax=800" width="260" height="200"></a>s with no problem. So a couple hours after the test, the cramping, screaming, retching and vomiting commenced and continued for a good 3 hours. That sucked. She also managed to rip out her IV during one of the retching fits, so we moved her IV once again. This time it’s in her left foot. We have 1 limb (the right foot) left that hasn’t been poked. She was worn out for the rest of the night and slept through our family’s visit.</p> <p>GI doctor came in for a consult. He ran through all the ideas he had … very honest and open, which I really appreciate. Some of his theories would probably freak the crap out of other parents, so I wonder if he’s this open with everyone. In considering metabolic or genetic disorders, he asked if hubby looked like me … Asian, tall and skinny. I laughed really loud and probably startled him. Then without thinking I said, “he actually looks like you except more thick and square and Palestinian.” So he brightened up and said, “well, I’m Palestinian, too!” Ironic … and a relief I didn’t offend the guy! </p> <p>His game plan was to try a slow drip of Pedialyte of 10 ml (2 tsp.) over an hour to see how she tolerates it. If she still vomits, then he wants to do an endoscopy survey tomorrow. Well, she stayed<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCvXNFCLD_72vmZnSDjvZrQ1Ez57Crhup2rQNgoGDr7Y97snEEgZ9hTSZFgL1NyihYUy3BH9I9Um3j7bN8ANS-LB96lQ4MCb9Wq66s_o_ovTY13Sv_pdVitBrXviJf1or6JPtgGF60TlY/s1600-h/DSCN3862%25255B5%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="DSCN3862" border="0" alt="DSCN3862" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAMu8INhuktNTWPOY1fg_LaD8XZ3CAuWTSW2phJp4UiQGmGLciiO090RUsjYQlNGUhQu1czWiWd3w8nAx_vPdd0F2QhLiTGnQU_IrmQoShQlppYcCW-R40r7KWCexl6iJMSrV3yelYRmk/?imgmax=800" width="260" height="200"></a> up til 3 AM this morning retching and vomiting. So we’re on for the endoscopy tomorrow as well as scan of her brain to see if anything weird is going on up there given her existing encephalopathy (brain injury, seizures, etc). </p> <p>Plan for today:</p> <ol> <li>Turn off the pedialyte – nothing by g-tube except Lamictal (since it doesn’t come in IV form <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-sadsmile" alt="Sad smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieQNtZJlcU_7CdkI9aT9DuIm3b7nB3f7CQEGIolSA9GwI3mqwZGC-cYBEdWtqV8zuA_ZJNdM79w4PIGETLj1UiGdXdKPZ4WQ0s4IUks2TeWGOz2AZ1L7sjGTCntkQK7w8SKIN2vHOmlCQ/?imgmax=800"> ) <li>Schedule PICC, MRI (if compatible with her titanium hips) or CT Scan, endoscopy + sigmoid colonoscopy <li>Wash her hair!! nasty, vomit-infused hair …</li></ol> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com1tag:blogger.com,1999:blog-7723113705314427427.post-76970444717911870112012-03-05T16:07:00.001-08:002012-03-05T16:07:08.465-08:00J’s vomit/bowel hospital stay - Day 7<p>Today we begin day 7 at Seattle Children’s Hospital. Jennah continues to retch and vomit when anything over 20 ml is administered through her g-tube. There were a few hours where we were dripping as much as 60 ml/hr (2 oz/hr) of the laxative in her without vomit, but that streak met a wet, messy, violent end.</p> <p>An x-ray yesterday shows evidence of fecal impaction, but it hasn’t been confirmed by the GI team. Enemas have been ineffective. Oral/g-tube laxatives haven’t stayed in long enough to be effective.</p> <p>We also started Jennah on IV parenteral nutrition (PN) since she has been without formula for nearly 2 weeks. This solution is custom formulated each morning based on blood draws. Unfortunately, the IV can only be used for maximum of 3 days before we risk vein damage and/or infection because IV veins are small, whereas the nutrients administered contain large molecules (i.e dextrose) and amino acids. Since we don’t anticipate that she will be able to consume any reasonable amount of nutrition through her g-tube any time soon, we will have to move on to a peripherally inserted central cathether (PICC), which essentially goes into a much bigger vein and leads directly to the heart. So that sucks since it’s obviously more invasive and therefore, more risk involved.</p> <p>So here’s the plan for today:</p> <ol> <li>perform a dye study – shoot a barium dye through the g-tube to confirm function of her gastro/digestive system, placement of g-tube, anatomical structure, and rule out further obstructions.</li> <li>insert a PICC – requires a sterile field and mild sedation.</li> <li>insert a new IV – J just pulled her old one out during a retching episode seconds ago … nice.</li> <li>meds – normal anti-seizure meds (Lamatrogine, Phenobarbital), Famotidine (Pepcid – acid reflux), and Zofran (anti-nausea) </li> <li>try giving some Pedialyte through the g-tube, just to see what happens.</li> <li>consult with GI team</li></ol> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com1tag:blogger.com,1999:blog-7723113705314427427.post-37956937709484022952012-03-02T14:45:00.001-08:002012-03-02T14:45:44.417-08:00Life’s a beach … and then some.<p>Exactly 7 days ago, we were on the beach charging guacamole and virgin pina coladas to room 118 at the Westin Resort in Puerto Vallarta, Mexico. Today, it’s day #4 in room 3139 at Seattle Children’s hospital in the Train zone. I’ve been running upstairs to the cafeteria each morning for my breakfast, poppy seed bagel w/ cream cheese and a Starbuck’s drip coffee for $2.53 … no room charging privileges here.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3g0CRGXT8XP396ll6Wh3zrvphlQPySw0MHHccuxAcJUX4G0iJ6mTdQ6pVzW1pHQSBmxaVzUg4z_y-WFE5vy4XYfbAC3KHw7g31L59xkGmkS1y8OTPe_Nvi6s6vJ4Z7onpbTOCQJBFKuA/s1600-h/pvr%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top: 0px; border-right: 0px; padding-top: 0px" title="pvr" border="0" alt="pvr" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipViZWfUsFw262WbbMpsYDYWDHjUmgHcd646kikBppMqYzpjACxnAHSlg6Wbcw3DxJKXfzjtlYcUAs6XX2wuhVo1VJpr3_Y3UuNtB9iotqYFsc-8xgBk5sgnO-dCtJCvI0O1vfTNb5qqI/?imgmax=800" width="260" height="181"></a></p> <p> </p> <p> We were here …</p> <p> </p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaXHCZ9NWbT5y4PaZRliW0s34FG5TVw173SMr9rjscY_ElRE1Ur4oriSpkNTtB5_Vz-nkqxMn8T8t0V9bdd-XYgNEFsVtqV3DDEop3IRH2st4xUGxyXK36QF2SqQ4uboD1iD1VA5F1GLs/s1600-h/DSCN3843%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top: 0px; border-right: 0px; padding-top: 0px" title="DSCN3843" border="0" alt="DSCN3843" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgomSJJPC8bYeaOc7ousVytD8piGvdXjy3VKGleNEURO3xTT5ZDsxEdaks0I35ahpUr3aHMekRu8KlIZOQ0glaSCJsuASkXH757Hcqll0ziia9-GUf3tFro_yF_o5-91FYhJqJXntp3f3U/?imgmax=800" width="260" height="200"></a></p> <p> </p> <p>and now we’re here.</p> <p> </p> <p> </p> <p> </p> <p>It all started with a seemingly harmless cold. Probably a virus picked up from preschool, her siblings, or her nurse uncle. She had the sniffles for a couple of days and a little cough as she always gets at the end of a cold to clear out her lungs. So she spit up A LOT. She spit up all over grandma’s rug and sofa on Super Bowl Sunday. With increase spit-up, you can get an increase in stomach acid to help digest the mucous build-up. On Feb 13, 7 days before our scheduled trip to Mexico, I took her in for an ear and lung check. We also got Zantac prescribed in hopes of alleviating the acid reflux issues. Unfortunately, the Zantac may have made things worse by causing her additional nausea.</p> <p>February 20 was our departure date for our first ever family vacation since Jennah was born. She had been spitting up for a number of days now, which meant most of her anti-seizure meds were coming up as well. So on the second leg en route to Puerto Vallarta, Jennah had a seizure on the plane. I got to use the airplane-issued barf bags for its intended use for the first time. </p> <p>The first night in Mexico was a disaster. Jennah proceeded to vomit with every feeding. It was a mess and <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicGbSPM5hBSJML9065CWKXe-9Q9jYpRNUUD5lC85Jy9HUZ9J_zYxyKiPJxo4O9QmJKpQibYMl6jZWeH_nYNuXzrb15rOucOc106uacdNx5uWSE7kLo4_SOX5c2TJXX7BveEnEILwVbN_o/s1600-h/DSCN3807%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top: 0px; border-right: 0px; padding-top: 0px" title="DSCN3807" border="0" alt="DSCN3807" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQrJwcuQvvEUPRiMib3z3_T6R1Fm84XGhhR49t93VSvStof0Af9sfb5NxVz6Hd1F6mNeomXDKVOKjlwi2jrZA1whIhrFwND9NwWI6sydOSbaUiAQ0EmruC3K61Q_ftTOM8oijqADZeKTs/?imgmax=800" width="200" height="260"></a>we ran low on her burp clothes and laundry. I was hand-washing clothes in the sink continuously and our room smelled of sour milk. We had taken 20 cans of formula for the 4-day trip since she is supposed to take 3.5 cans a day and I wanted to be prepared with extra in case we were stranded somewhere. We used 5 cans of the formula and not one of them was completely empty when I threw it out. She took in literally less than 20 ounces of formula over the 4 day period. I tried to give her a few ounces of water as often as was reasonable, but most of that came out as well. Although Jennah’s siblings had a well-deserved, wonderful time in Mexico, I couldn’t wait to head back home. </p> <p>We arrived home late Friday night and I put a call into her pediatrician’s office the next morning. Perhaps I down-played the situation too well because they suggested that we could wait until Monday to visit her regular Dr. during normal office hours. So we agreed and tried our best to get some fluids into her. She had another tonic seizure that night and was looking very weak and frail the next morning after vomiting out her morning meds and feed. So we decided to take her into the Seattle Children’s urgent care clinic in Bellevue, despite the fact that I was supposed to play in a Sammamish Symphony concert that day. At 2 PM, precisely the same time as the concert downbeat, Jennah was put on IV fluids. After a dose of anti-nausea meds (Zofran), and a bolus of IV fluids, we were released. We got her to hold down a solid 2 ounces of formula. 4 hours later, it all came back up. </p> <p>On Monday, we went for a follow-up with her regular pediatrician. We tried to push more fluids into her g-tube and got more Zofran. She still vomited relentlessly. </p> <p>On Tuesday, her pediatrician told us to go to the ER at Seattle Children’s. This time, they decided to admit her since it’s been over a week of persistent vomiting and she was thoroughly dehydrated with no wet diapers in over 6 hours. </p> <p>The unofficial diagnosis is that Jennah is full of sh!t. She’s severely backed up and the dehydration just exacerbated the whole thing. It’s a common problem among children with cerebral palsy and we do have to regulate her with daily doses of Miralax, but this was apparently not enough. So we’re working on a total bowel cleanse and then we’ll try to work up her feeds until she’s back up to normal intake levels. The problem is she keeps vomiting up the NuLytely solution that is supposed to clean her out and now they’re worried about malnourishment, so we’ll probably start IV/TPN feeds today … joy. This is obviously taking days to accomplish … we anticipate staying throughout the weekend.</p> <p>So there you have it … I can’t recall a year since 2007 that we haven’t had a stay in the hospital.</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com2tag:blogger.com,1999:blog-7723113705314427427.post-48874942987315764072012-02-06T10:51:00.002-08:002012-02-06T10:57:57.727-08:00Good Mourning …<p>Now I remember why I started this blog over 4 years ago … to rant and rave and get things off my chest. Many of you probably feel better about your lives and pity mine, which I honestly don’t mind and you should not feel guilty about thinking, “glad I don’t have to go through that.”</p> <p>Last week was my birthday and I cried a lot … “It’s my birthday and I can cry if I want to” taken literally. As one of my friends said to me last week, I am in mourning. It’s nothing new, but periodically, I realize that our lives is not and will never be normal. This Year of the Dragon marks my 3rd round. I look back at the last year of the dragon in 2000 and cannot believe that my life was so utterly different. So <em>normal. </em>Therefore, I’m mourning the loss of a normal life.</p> <p>I am not regretful, resentful, or ungrateful. To the contrary! Jennah has been the biggest gift to me. I never ever wish that she is any different from how she is. Of course, I want her to reach her fullest potential and I spend every waking (and sleeping!) hour trying to help her achieve that, but I neve<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnd73dWgvNwOeoOsMym-6MXi44WwI7NHQf-eC7NlzPJ6IRHnF9bXuIsAskqMbT086kFWE0SHY7nv62UNMROjvNGx14Qi3HiLNfBKpkHZTySVe9_ajsL79HWgQD4jz0m_77aFOTuDIDk5c/s1600-h/20080812%252520004%25255B9%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top: 0px; border-right: 0px; padding-top: 0px" title="20080812 004" border="0" alt="20080812 004" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUc5OSOgS1Zd-iv7uC2v9kwN6ZAf_lH63s2zBZuT_eRWsCq8eZj17eyYUFvW1_P-FPAEiBQe5UcLB9JVBcz7jw_BjrtBMZ4ZLqtPiFG9kU5uJHauQ_UAmGrcnDLs2pKJRQwuUI2BiV5zA/?imgmax=800" width="260" height="180"></a>r think, “oh how I wish she can walk, talk, and see”, and yes, I highly resent those people who say just that. She is who she is. If she could see, she wouldn’t be the same Jennah with the wandering eyes and keen sense of hearing. She is blessed with not having to see or understand some of the horrid visions we all have to endure. She shouldn’t walk … do angels walk? She’ll have perpetually clean, baby-soft feet that I can kiss all I want.</p> <p>Everything was finally settling down and falling into place. I got my husband and home back in order and Jennah was overcoming the withdrawal symptoms from weaning off the phenobarb. She has been so much more aware and starting to sit up … we were getting comfortable. But then the seizures came back. It was really only a few seizures for just a few days, but it was like a slap in the face. A reminder that our lives cannot be normal and we shouldn’t forget it. It made me realize that we can never let our guard down. We’ve only been doing this for 4 years …this is going to be a long, long road.</p> <p>Our house is littered by crazy equipment<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcOb71brHOl4vCupzxhWmUR_M-QAUOGLNtKfN86bjSvzueo_eH2RD1vSc8P1NNsD7wM1et9R9bcI7UoHsvWzizbMAN5eTQgcoCaaRLV3KS6bvoobrdfcbvrpgoTHxWpWdCb4gD29fyCiQ/s1600-h/002%25255B3%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top: 0px; border-right: 0px; padding-top: 0px" title="002" border="0" alt="002" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdvVhkzgv5cUsDwu8xctIA60xbEl5ouWsetYINS-VAuj_6AyAu1IxIz3n6WTL7AeXfCEcD9H75rTJIjKQkPTyvtBBu1yUVCWW6y8Xa1GcvkJw7WDs9l7HLld9TfSqb_lajn_7aFSjxZac/?imgmax=800" width="244" height="184"></a> and devices that has become part of our décor … there’s a floor sitter, the jungle gym that I built out of PVC pipes, and a wedge that hubby had custom-made in Dubai in the great room; a stander in the dining room, and feeding supplies with dozens of can of Pediasure in the pantry. </p> <p>So yes, our lives are a bit complicated and it takes some extra effort to get through each day. Yet I feel like I could probably do so much more if I didn’t mope around and act so selfish. Do I really need any “me” time? Do I really need to sleep, eat, or shower? What about my other two children? I shuttle them around and tell them what to do, but I never sit down and play with them. But then again, do I really have a right to complain when there are so many others out there who are cold and homeless, or in pain fighting cancer? No, I shouldn’t complain … I should be thankful.</p> <p>BTW, I think one of the worse things anybody can really say to me once they learn that Jennah is disabled is, “oh, I’m sorry.” WTF??!! That makes me boil. What is there to be sorry about? I’m certainly not sorry to have a child with special needs and it’s not like anybody did anything wrong … she is not a FAULT for goodness sake! No … you say, “what a blessing”, or “you’re so lucky.” If there’s anything to be sorry about, it’s that I sometimes (or often) have a bad day, or become weak. Then it’s OK to say, “sorry you’re having a sh!tty day …” </p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com3tag:blogger.com,1999:blog-7723113705314427427.post-62895351391474933332012-01-27T10:27:00.000-08:002012-01-27T10:58:24.060-08:00Happy New Year!<p>We’ve had 3 or 4 new calendar years, i.e. Eid, Rosh Hashanah, “normal calendar” New Years, Chinese/Lunar New Year, and 1 new fiscal year begin since I last wrote … 7 months have gone by. </p> <p>During the past 7 months, Jennah has finally fully recovered from her hip reconstruction … yay! The doctors told us it could take up to a year to recover, but I didn’t truly believe it. The procedure was truly invasive and traumatic and little Jennah is such a trooper for having endured it all. She lost a whole inch in height/length, but she can now fully straddle the horses for hippotherapy and her hips are well placed in the sockets … wohoo! In addition to the robust titanium hardware now permanently implanted into her hips are 6 scars and extra hairy legs … another “rare” side effect from having a fully body spica cast that just happens to affect her.</p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw8pTa2PUS9mg44hX3lH9Ojenwt4_wt2gRr4mpUc_9kR-ViAYZn1saSvXElavwwrK6YY1fxiW2zqyw4yd53Uz5hPoTLAToxYFsOPj3sFfyICPYCElLVxRB0DVBi71Oc5mdZUN2pty4dnM/s1600-h/JHippoOct2011%25255B3%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto; padding-top: 0px" title="JHippoOct2011" border="0" alt="JHippoOct2011" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7W35tINFOdTmI4XjnHnl89oT3m3f4Ri40srsgR8_6bdKGbWbnb7ouqun4Y36VXRK_yJrtqyQzwoQ5lj3QdxZxKKczT8kPmaMioXmahA1-uEMNi2DiqLmu5f5hShJ_suPVBG8LlHXwrz4/?imgmax=800" width="184" height="244"></a></p> <p>In September, Jennah began attending preschool at the local public school. I drop her off at 12:30 everyday, except Wednesdays, and she rides the bus home at 3:15. This has been a challenging adjustment for mom and Jennah. Major separation anxiety for both! <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWnXhgFgLTbQ0EtFnubUNdSTKSLSTk7mE6NFwXz389xJBWvbCC4mPwjManAJ5YZbmplCx42nI7SNR0_xT2JCmzOUgZizHpY7XdkKlFDYEQGFz_fXuBckAd2Q-jJ9_ujdtx8RHEzWnK6UY/s1600-h/WP_000287%25255B3%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="WP_000287" border="0" alt="WP_000287" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjViW1dWFVh2oCUSw7VEIkXpjg-DtmZXmlqNjxW1FBXyvjwJWGN8oAew8XNZxBnXu1GJXdFBltwb19w1sLR8i3iuDOZiTTMU0Tv4s9dTuuxx87reMyqbTvSegn9erEbovLtvo2JIcnv-M8/?imgmax=800" width="184" height="244"></a>Then at the end of October, just as she was adjusting well to school, we decided to wean her off of one of her seizure meds. Great news to be able to get rid of one of the most depressing, sedative medications on the market (phenobarbital), but then withdrawals hit. The holiday season, between Thanksgiving and New Year, was filled with screaming and temper tantrums as she worked the medication out of her blood. She is finally feeling better now, but she has unfortunately started having seizures again … UGH! We are feeling pretty confident that we can get the seizures back under control by increasing the dosage of her other medication, Lamictal, which she’s tolerated very well with very little side effects. </p> <p>Nonetheless, Jennah continues to make some really great, exciting strides! She is now standing in a stander at school up to 30 minutes at a time without complaint. She can also keep her head up (as you can see in the pictures!) for minutes at a time.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDKGp5GfcvcENpU7IDFLvOCue4N2DuBlIr54z6zqfROIrHnvnYGbuNu9ykb9N_J5QWPbLNy1VLvgwOoMPLIwhINkHbLIDV01cZiRaTtkiSIDd__K3xoq5vCGQ9In_szYEo7Ap4_nhQyYw/s1600-h/WP_000269%25255B3%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: right; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="WP_000269" border="0" alt="WP_000269" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzKjxOi1Ij2hkq-pbmS-OmHTSEZVkq6OlaDc3K29ntf3_nTvozpHlbREch9fmCmkn7qcWAhp5_pCwYVNy7WlqcJgcTz9D3e8m3MZaZ2zMMi3NXB1cHIjr1MHVzh5y6Z-Fn8Az6Y9XFkQg/?imgmax=800" width="184" height="244"></a> Now that her hips have healed and her head and trunk control has improved, she is beginning to sit, unsupported, for a few seconds at a time!</p> <p>I still reminisce a lot about Dubai … especially the perfect weather they must be having now, not to mention missing my dear, dear friends. But when I see how much Jennah has accomplished this past year (we arrived on Christmas day, 2010), I remember why we made the decision to come back and why this is the best place for Jennah. My immediate family is here, too, and without them, none of this would be possible. The pediatric specialty care here is just incomparable to the rest of the world. Emergency aid in less than 5 min, blood test results in hours, nurses on-call for random questions … luxury to the parents of a disabled child! The benefits of Jennah attending an integrated school program alongside typical children have been immeasurable.</p> <p>We are home now … Happy New Year!</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com3tag:blogger.com,1999:blog-7723113705314427427.post-55640260430392713742011-06-24T15:28:00.001-07:002011-06-24T15:28:37.957-07:00How I ruptured my eardrum–by me, Miss Jennah!<p>A ruptured eardrum sounds a lot worse than it really is … although in my case, it probably is a lot worse than it really should be! It’s a wonder how sweet, innocent, little ol’ me managed to rupture my eardrum. It couldn’t have been from too much Lady Gaga, could it? No. Nonetheless, I will share with you my technique for rupturing an eardrum …</p> <p>1. Have your parents decide that you need reconstructive hip surgery, which will put you in a spica cast for 6 weeks. This will keep you immobilized from the chest down (don’t worry, you head and arms are free!). Despite the nasty smell of the spica cast after the first week, you will begin to become accustomed to the cast. In fact, you will feel very secure in the cast and find that you no long need to use your leg muscles. It’s a great way to lose weight and muscle mass!</p> <p>2. This is the most important step. About 1 week before getting the cast off, catch a cold from your brother or sister. If you don’t have a sibling, an airplane ride or trip to the Dr. may suffice.</p> <p>2. After 6 weeks, have the spica cast sawed off. My mom couldn’t wait for this to happen since she was really tired of carrying me around in the cast and treating it daily with a vinegar wash. She tried to make the cast smell better, but it really didn’t work … shhh! don’t tell her!</p> <p>3. Immediately after having the cast removed, SCREAM! and cry and scream some more! Because it’s going to hurt like crazy, folks! They will put you into a soft brace to help maintain your legs and hips in the same position as the cast, but it’s not the same! The soft brace is “soft” … it moves and so will your hips. The skin on your legs will have goosebumps big enough to slow down a speeding car in Dubai. Stop screaming only when no one touches you. You won’t want any hugs, you won’t want to be held, you won’t want to be fed. Most importantly, don’t move a muscle because it will hurt and it’s just really scary!</p> <p>4. The first week out of the cast will take some work because you have to cry and scream a lot and not sleep very much. Also, since you won’t want to move or <em>be </em>moved at all, for fear of pain, you won’t be able to belch/burp/wind, so you’ll spit up a lot. Your spit-up and vomiting will be even more productive and messy if you managed to catch that cold earlier as mentioned in step 2. Since you can’t change positions very quickly to vomit into a bucket or off to the side, a lot of it will just shoot right back up into your nose and into the back of your ear. Prime recipe for an ear infection, wouldn’t you say?</p> <p>My mom noticed my ear infection about 10 days after I got the cast removed. Since I can’t talk or tug on my ear like other children, my mom somehow figured it out when I flinched at the touch of my ear. Then she tugged on it again, just to make sure … OUCH! Gosh woman! Leave my ear alone and get me some antibiotics already! So we got to visit the Bellevue Seattle Children’s Urgent Care clinic for the first time ever! I was looking forward to the ride in the car …</p> <p>Oh sorry … I’ve diverted from my step-by-step instructions!</p> <p>5. Continue to move around very little. With little movement, you won’t be able to help your ear relieve the pressure. You don’t want that ear infection to clear up too quickly! My friends with tubes in your ears, I’m afraid it will be very hard for you to accomplish this task since your tubes will help your ears drain … drats!</p> <p>6. Once enough pressure has built up in your ear, let your eardrum rupture! They say that sometimes a rupture will heal on it’s own immediately, but if you have a case bad enough, you can get it to rupture again … wohoo! </p> <p>I managed to do this since I’m sooooo good at not moving around. When my ear started draining, blood started seeping out along with the drainage. It was kind of messy! My mom thought it was just ear infection drainage, but I continued to cry and scream, and, most importantly, bleed from my ear a bit more. So we got to go to the Urgent Care clinic again! Only 5 days from our previous visit … fun!!!</p> <p>I have some more antibiotics in the form of ear drops now. This should help heal the eardrum and keep it healed. The Dr. thinks I’ve ruptured it at least twice. I’m feeling better now and my mom can lightly touch my ear to get the drops in. I’m also starting to move my legs a bit. Best of all, however, is that I’m out of my soft brace! It still hurts to be moved around, but I can tolerate being out of the brace now. </p> <p>I’m going to go back to my own pediatrician this week, inshallah, to make sure the eardrum has healed. Hopefully it has because I don’t want a patch on my ear, or worse, and surgical procedure!!! My mom would not be pleased. She’s so easily stressed out anyway … </p> <p>Thanks for reading my long blog post! </p> <p>Love to all, </p> <p>Miss Jennah</p> Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com2tag:blogger.com,1999:blog-7723113705314427427.post-31733677713609398822011-05-24T10:26:00.000-07:002011-05-24T10:26:57.136-07:002 more weeks!I see my last post was while Jennah was in recovery from the surgery! So much for keeping up via the blog, eh? I know that many of you have put up with my bitching and whining over FB where I also have some crazy pictures of her in the car as well as the 5 “easy” steps to changing a diaper. As I’m sure you can understand, these past 4 weeks have been a bit hellish. We spent only 3 nights at Seattle Children’s and were released after forcing Jennah to have a bowel movement before the end of the day’s last rounds. I was ready to get out of there‼<br />
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The first week was absolutely terrible. She was on oxycodone (causes Jennah more constipation and nausea), acetaminophen, lorazepam (a muscle relaxer) and two types of stool softeners along with her usual seizure medications. I was drugging her with something every two hours around the clock. One of the worse things about her first week was the muscle spasms. They had cut through and lengthened 2 pairs of her muscles, the abductors and adductors, so they spasm as they begin to heal back together. The spasms looked exactly like her seizures. It was heart-wrenching not knowing if the pain had provoked her seizures or if they muscle spasms, or both. They were painful, no doubt, and she let us know. <br />
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By the end of the second week, after dozing off during both of my classes (luckily my professors both understood and pitied me), I was ready to throw in the towel and quit my studies. In the four years that I have spent earning this degree, through Jennah’s infancy and seizures, through the move to Dubai and back, I have never wanted to quit so badly. Through the support of my husband and classmates, I’ve come back around and am still expected to graduate in 2 weeks! Don’t get me started on how much these next two weeks of projects, papers and finals is going to suck …<br />
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So, it’s been 4 crazy weeks. I have not had more than 90 minutes of consecutive sleep in 4 weeks … well, aside from one night where Jennah had a bit of a cold and slept for 4 hours straight! I just hope she didn’t get any bed sores from that stretch of immobility! Anyway, I am tired. Exhausted, really. I don’t know if there is really a word to describe my physical being of exhaustion and mental stress. My complexion is shot, my hair is greasy, I have more eye wrinkles than my mom, and my pants are falling off. <br />
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BTW, did I mention that Jennah’s cast is to be removed on the day of my last final exam? No telling how she’s going to react to being free, but put into a brace in a different position. I expect she’ll be sore and have more muscle spasms. Nothing ever comes easy. Luckily, I just learned that hubby will be in town that week … phew!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHNA6ujDl3iStNc5XQ-BwQ-1Yn1ESDs0VIHHkLtOeQd3BpR4l_EjzU_p0cfbq7kgsccuTHqU7Xy9Ki0Z-epALCvpaI245xv75Bsq-6zJci6CrRjx_-R1ZXLXem1hdMA5I8R_L1JE0CRvM/s1600/Jsit.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHNA6ujDl3iStNc5XQ-BwQ-1Yn1ESDs0VIHHkLtOeQd3BpR4l_EjzU_p0cfbq7kgsccuTHqU7Xy9Ki0Z-epALCvpaI245xv75Bsq-6zJci6CrRjx_-R1ZXLXem1hdMA5I8R_L1JE0CRvM/s320/Jsit.jpg" t8="true" width="240" /></a></div>On the bright side, Jennah is laughing and smiling again, despite her nasty-smelling cast. She really is such a trooper and just so incredibly sweet.Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com0tag:blogger.com,1999:blog-7723113705314427427.post-83441148564161611622011-04-25T15:45:00.000-07:002011-04-25T15:45:18.642-07:00J has new hips!<div class="separator" style="clear: both; text-align: center;"></div>We checked in at 7:15am and wiped Jennah down with an antimicrobial wipe before dressing her in a hospital gown. We met with 2 anesthesiologists and 1 of her orthopedic surgeons. Here is Jennah enjoying some last minutes of cuddling... <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9Ut4AHLGbMBkDxUyykU123GBTDew3h56V-bC9byAO05q2Fp7-TmQXyfdVVcBQYEKD8d09gmnpeBfMulSPwzljS01nMrintyz0J-qrr4xxYL6InvtcPGI3ck9gLtuiJnyhpJoGDgLRhPg/s1600/WP_000075.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" i8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9Ut4AHLGbMBkDxUyykU123GBTDew3h56V-bC9byAO05q2Fp7-TmQXyfdVVcBQYEKD8d09gmnpeBfMulSPwzljS01nMrintyz0J-qrr4xxYL6InvtcPGI3ck9gLtuiJnyhpJoGDgLRhPg/s320/WP_000075.jpg" width="240px" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Finally, one of the anesthesiologists came by and told us it was time to give her our last hugs and say "see you later." I handed Jennah off to the Dr., right into her arms wrapped in her favorite purple blanket and Mr. Caterpillar. No tears ... yay for me!</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">We were issued one of the surgery pagers and proceeded down the corridor where we bumped into her main orthopedic surgeon, who looked like he had just finished breakfast. Good to know he'll be working on a full stomach! </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">We were paged at 10:15 to learn that the surgery had begun. The sound of power tools whirr in my head. They expected the procedure to last 3 - 4 hours.</div><div class="separator" style="clear: both; text-align: left;">Just past 12:30, we were paged again and informed that they were just closing up and were beginning to cast. They expected her to be on the table for another hour.</div><div class="separator" style="clear: both; text-align: left;">At 1:30'ish, we were paged again and met with her surgeon. He detailed the procedure and showed us before and after x-rays. I never realized how terribly displaced Jennah's hips were until I saw her new, improved, bionic, no-way-getting-through-metal-detectors hips! Check it out ...</div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpfGXS4B4tirOcBwrrus9ehV2_PhJsqyWQjSMl8ydRGFZ-za_tYpBed6DVMs6nBH1jViOvdu1En_dAwtbmJFxefRTxp3QdV4v2he5sx18c0fw02uzkdcndufOO0pKe7XWZ4GIv7g6Q81w/s1600/Photo_DCFAD20F-A217-6AF5-00D1-895C466462DB.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" i8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpfGXS4B4tirOcBwrrus9ehV2_PhJsqyWQjSMl8ydRGFZ-za_tYpBed6DVMs6nBH1jViOvdu1En_dAwtbmJFxefRTxp3QdV4v2he5sx18c0fw02uzkdcndufOO0pKe7XWZ4GIv7g6Q81w/s320/Photo_DCFAD20F-A217-6AF5-00D1-895C466462DB.jpg" width="240px" /></a></div><br />
They've cut off some of her femur and stuck it into her pelvis. Hubby is yelling at me saying that this is complicated language. I assure him this is laymen terms! Anyway, let me know if you disagree ;)<br />
OK, so there are chunks of her femur in her pelvis along with some allograft bone. You can also see the hardware in bright white. Not the oddly shaped big white thing that is supposed to protect the ovaries from radiation, but the plates, pins, and screws on both femurs. Stainless steel. Airport security will truly suck now!<br />
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It's nearly 4 PM now, and we still haven't seen little Jennah. She is still in recovery and we hope to see her soon in her inpatient room where we will spend the next few days, inshallah.<br />
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Thank you all soooooo very much for the warm thoughts, messages, texts, FBs ... everything!!!<br />
(((HUGS!!!)))<br />
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</div>Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com1tag:blogger.com,1999:blog-7723113705314427427.post-78920874954760840602011-04-24T12:50:00.000-07:002011-04-24T12:50:38.601-07:00Cold feet ...Not because the cast will cover nearly every part of her lower body just short of her feet, but because she went into a giggling fit last night around 11 PM while my bro and I were watching Harry Potter and the Deathly Hallows. I don’t know what set her off, but she just started giggling and squealing so loud that grandma woke up and ran downstairs to see what was going on. Jennah was, and is today, so happy and in such a great mood. No pain, no constipation, just fun and laughter.<br />
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I wanted to pick up the phone and call the 24/7 surgery line and cancel this whole blasted thing. I’ve spent most of today preparing for tomorrow and the upcoming week’s madness. Make sure A & B have clothes to last the school week. Clean up the bedrooms so they have some place clean to sleep, get dressed, and brush their teeth. I don’t know how much of them I’ll see this week. I don’t know if they understand what is going to happen to their little sister. Maybe that’s a blessing, actually.<br />
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We are all spending a lot of time snuggling and cuddling with sweet little Jennah today. It’s going to be hard to do the same when she’s in a body cast.<br />
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Her last feed will be at midnight. Her last clear liquids at 4 AM. After I make sure A & B's breakfast and lunches are prepped, we’ll leave at 6:30 to get to the hospital in time for our 7:15 checkin. Then we pray and pray until we see her again, 6 hours later, inshallah.<br />
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I’d be happy if tomorrow never came …Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com0tag:blogger.com,1999:blog-7723113705314427427.post-1536463751083253082011-04-20T12:18:00.003-07:002011-04-20T12:26:46.757-07:00Around the World in 6 Hours …That’s what Jennah’s orthopedic surgeon calls it, “the ‘Around-the-World’ procedure”. I guess the “world” is the femur head. Jennah was officially cleared for surgery last Tuesday after spending most of the day at Seattle Children’s. Using my C.A.P. (Clinic Access Pass for unfortunately frequent patients), we were checked in for a day for clinic visits. We started out getting measured for her spica cast, which will go from her waist to her ankles. Crap! I just remembered that I forgot to request a color‼ I really don’t want hot pink … chime in your opinions now! I’m thinking purple? Aqua blue would be nice. OK, sorry … totally diversion there. I’m in a bad mood from studying, reviewing the hospital check lists and preparations, and my thoughts are everywhere, but I’ll try to limit the rantings …<br />
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So where was I? Yes, she’ll be in a spica cast for 6 weeks and then put into a brace, for which I did manage to request purple cushions! The brace will be removable for baths and we’ll wean her off within another 6 weeks, inshallah. <br />
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Then we went in for xray. We’ve had so many xrays that we should be issued a radiation monitor button. The usual …<br />
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XRay tech: “Mom, any chance you can be pregnant?”<br />
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Me: “Good lord, I hope not!”<br />
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Same conversation every time. I don the lead apron, which sadly I recognize are new since our last visit a few months ago. I take off Jennah’s diaper and she proceeds to urinate, as usual, on the table despite my pleas for her to pee beforehand. The girl just does not listen to her mom’s instructions! :)<br />
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Our next visit is with the surgical team … our surgeon, a resident, a physician’s assistant, and his nurse (who won’t be in the surgery, but she’s awesome). While waiting, Jennah took the opportunity for a nap in my lap and I finished my homework due later that evening. The “Around-the-World” procedure consists of the following:<br />
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• Bilateral acetabuloplasty – reshaping of the hip socket (acetabulum); nails may be inserted to help shape and then removed after a year or two<br />
• Bilateral osteotomy – reshaping the femur heads <br />
• Bilateral tenotomy – cutting of abductor and adductor muscles to manually loosen the tone and, hopefully, prevent dislocation again in the future.<br />
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Procedure, including anesthesia, will last upwards of 6 hours. Anticipate at least 4 days in the hospital post-op. Expect a lot of discomfort and pain. She’ll have an epidural put in. Expect recovery to last throughout the summer. Good times. Pray a lot.<br />
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Then it was time for our P.A.S.S. (Pre-Anesthesia Surgical Services) appointment. The most <em>non</em>-invasive appointment of our day and Jennah loses it. She screamed bloody murder through the whole meeting and all the way through the halls as I tried to calmly carry her (32 lbs of screaming, wobbling Jennah) to the outside. You can see the poor kids in the surgical waiting area thinking, “What in the hell did they just do to her behind those closed doors???‼!” <br />
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After calming her down and forcing some lunch into her g-tube, we went back in for her blood draws. She jumped a bit at the prick of the needle, but simply sighed and smiled. Thanks, Jennah …<br />
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Finally done at Seattle Children’s, we cruise back to the eastside to get her cleared by her pediatrician, who happens to be at the farthest practice we could find! Another long wait and Jennah takes a nap on the table … poor thing. After some more poking and prodding, she is finally cleared for surgery on Monday, April 25, Inshallah!<br />
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OK, I'm in a slightly better mood now ...Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com0tag:blogger.com,1999:blog-7723113705314427427.post-28133132805959919822011-04-08T15:33:00.002-07:002011-04-08T16:12:42.197-07:00It's never easy<div class="separator" style="clear: both; text-align: left;"><span style="font-family: Arial, Helvetica, sans-serif;">My thoughts are occupied with Jennah's upcoming hip reconstruction. The pre-op appointment is coming up on 4/12 (inshallah) where we will discuss details of the procedure and the dreadful recovery period. Our hospital stay is scheduled for a <em>minimum </em>of 4 days (ISA), just for pain management. I also know that she'll be in a spica cast, from her waist down to her knees, for 6 weeks. There will be bone shaving and muscle cutting involved. I keep visualizing the pelvic area of my cadaver back in anatomy lab ... we had to use power saws to cut through bone. It was loud and generated an amazing amount of heat. The muscles, specifically the psoas, looked like the shredded meat you get in a good quality burrito. Surprising easy to slice with a simple flick of a sharp scalpel. Jennah's hips were improving back then and we thought surgery was off the table.</span></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: Arial, Helvetica, sans-serif;">It's never easy and never gets easier to have a child with profound disabilities. As she grows, we overcome some issues and gain others. Her seizures are well controlled now and she is more aware. More awareness equate to more emotions, desires, and temperament. It's easy to tell when she's happy and comfortable. It's torture when she's crying and can't communicate what she needs or what hurts.</span></div><span style="font-family: Arial, Helvetica, sans-serif;"><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Some may wonder why we are pursuing the reconstruction. She will not walk, she will not even stand. Maybe she'll sit some day, inshallah, and this could only help. It will also definitely aid in proper hygiene. Simple hip abduction is taken for granted until you try to change Jennah's diaper. Many of you know how obsessive I am about hygiene in that area, so this is just borderline selfish for me! But seriously, imagine in the puberty years (ISA), how important it will be to keep the area clean. Finally, pain management. The odds were about 50/50 that she will suffer from juvenile arthritis. But with her new found awareness, those odds are more likely that she will indeed suffer the pain of juvenile arthritis and pursuing reconstruction at an older age can be more painful and risky with more blood loss.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I guess I'm sharing all this (too much, perhaps?) info to convince myself, again, that we are making the right decision. I've prayed for months ... maybe over a year now ... for guidance on a decision. Her therapists and doctors (orthopedic surgeon, neurodevelopmental, pediatrician, neurologist) all agree that now is the right time to do it. So why do I still hesitate? Because I look at this every day:</span><br />
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</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Arial, Helvetica, sans-serif;">When will I see her play and smile like this again after the procedure? This is what I dread most. Will she smile while she’s in the cast? Will she laugh and dance around when we turn on Lady Gaga’s Pokerface (her favorite song … blame the uncles)? This is what pains me … but that’s probably nothing compared to the pain she will have to endure. A pain she didn’t ask for, but we are knowingly inflicting upon her. It just doesn’t seem right.</span></div>Mom2ABJhttp://www.blogger.com/profile/09580533438952133676noreply@blogger.com4