Aubrey is 1!!

Happy birthday to my crazy little girl!!! I can not believe that a year has already gone by. It seems like just yesterday she was born. It has really been a crazy, stressful, hectic year. This by far has been the most challenging and stressful year of our lives. I can only hope and pray that this coming year is much much less "exciting". September 9th 2012 was a normal day until lunch time and then everything got crazy and miss Aubrey made an early enterance into the world. Her first day seemed fairly normal, other than her sudden enterance :) During her second day I noticed that she was more "noisey" when she ate than the other two girls, but didn't think much about it. During our stay in the hospital her eating got more difficult and we almost spent and extra day because she was loosing a bunch of weight. Her first few days were just the beginning of her very doctor filled first year. Within a week of being home she had a sinus infection and was on antibiotics. She cleared up, but the same symptoms returned within days. I mentioned to her pediatrician about her noisey feeding and he suggested a swallow study. At seven weeks old she was diagnosed with dysphagia and was shown to be aspirating on thin liquids. We were prescribed a diet of nectar thickened liquids and to keep her elevated after eating. From that point on things got more interesting and stressful. She had always been a slow feeding baby, but with the thickened liquids each feed was taking over 1 1/2 hours. By the time she finished a bottle she was already hungry again. It was a battle to get her to eat because eating was so exhausted. We battled through a number of ear infection and sinus infections and just general poor growth for the next few months. She was a very irratable baby and needed held constantly. She slept with us for months because she always sounded like she was stuggling to breath and was so fussy during sleep. She was not gaining weight, but this was being atributed to her constantely being sick. At her four month well baby visit her main doctor finally realized that something was wrong and began to panic a little bit. We were to have weekly visits and weight checks to closely track her progress or lack there of. Initially she gained a little, but the quickly fell off. Her formula was switched to an allergy free higher calorie and we were to prepare it so it was even higher in calories to try and combat the energy she was using while eating. Her motor delays were also becoming fairly evident at that time so she began seeing a PT. We were also given a deadline for weight gain, if we did not reach above 10lbs by the given date she would be hospitalized. Well, her weight dropped instead of gaining so she was hospitlized on Feburary 3rd, just shy of her 5 month birthday. We were expecting an over the weekend stay, but ended up being in the hosptial for 11 days, 7 at MedCentral and then 4 at Akron Children's. Having a child hospitalized had to be one of the most frightening times of my entire life. Poor baby underwent so many blood draws, a few x-rays, a couple catheteriztions, an MRI of her brain, and a sweat cholide test all within 11 days. It is a very helpless feeling to turn your 5 month old over to strangers and allow them to poke and prode her...which obviously is very painful. I am impressed that she was such a trooper and does not show a fear of doctors! Waiting for the results of the sweat chloride test was very stressful, initially all the doctors seemed to think she had cystic fibrosis. Her symptoms were very very similar to those of kids with CF. I was beyond thankful when that test came back negative. Watching her be sedated for the MRI was by far the most difficult thing during that hospitalization. I hope that no one has to watch that...it is beyond scary to watch your little one's life be put in the hands of a doctor and watch her try and fight the sedation with all her might. I could only stay a few minutes and then had to leave the room. After 11 days and finally some weight gain we left the hosptial with a failure to thrive diagnosis and no real answers as to what was wrong. The only thing that changed was they had us use a x cut nipple to help with her feeding. After our hospital stay we started PT and ST on a regular basis and eventually added OT into the mix. Watching her in her first few weeks of therapy was heart breaking...I know just enough about peds to know how far behind she really was. It's hard to be optomistic when you 5 month old still looks like a sickly rag doll with really poor motor control. Not much changed after being hosptilized. Her weight was very slowely going up, but still not the way they wanted, but just enough to keep us from being readmitted. The weekly appointments were always stressful, hoping and praying she was gaining enough. She continued to be sick with sinus/chest infections and ear infections on about a 2 week rotation. If my memory serves me right, she had an episode of choking around 6 months that prompted another swallow study. This was a bad day...her test showed that she was aspirating on every nipple/bottle at the nectar consistancy. She was moved up to honey thick and adding solids was delayed for another month. Her weight gain started to improve with the new consistancy...she was still gaining slowly, but not so bad. Her sinus trouble eased up a bit, but not so much with her ears. In the beginning of July she had tubes placed in her ears and things starting heading in the right direction.  She had started sitting up at 9 months, but other motor movements were still quite difficult.  In her 10th month she started crawling, going from laying to sitting, pulling to standing, and cruising the furniture.  She also started to pack on the pounds!  at 11 months she was 21.6lbs :)  Eating is still a challenge...she has a lot of texture issues and a very quick gag reflex.  The good thing is she really really wants to eat and works through the wretching and gagging a lot better than I would!  We are hopeful that we will be released for some of her speciallists at the end of September when all her follow up visits are.  She has seen so many...GI, neurology, genetics, othamology, audiology, and an ENT. We still have somethings to work on, but she is finally headed in the right direction. 

This year has been a challenge to say the least.  We have missed out on a lot of our friends and family's activities because caring for Aubrey and her illnesses has been a full time job.  I do no know how families with children with truly serious medical conditions cope on a long term basis...it is hopefully that she will out grow her issues.  All the medical test have not been able to point to a reason for her rough start.  Her neurologist is determined that she has a syndrome of some type, but all the genetic testing is normal.  So, for now we are just taking it for what it is.  Aubrey is Aubrey no matter what her tests show and we wouldn't trade her for anything.  Now "Walter" we could do with out :) 

If you made it through my ramble, that was Aubrey's first year.  I know that there are things I left out...it all blends together after a while and I've complained about her quiet a bit this past year.  I'm hopeful that year #2 will be better for her!!!