2 steps foward and one back...

I guess at least it's not one step forward and 2 back, though at times it sure feels like it.  The good news is that Aubrey graduated from PT and OT today.  She is where she should be with her gross and fine motor skills!  She had a good time showing off for them today.  She will continue to see the speech therapist for the foreseeable future, but I knew that we would be continuing with ST.  The not so happy news came from our genetics appointment this afternoon.  I went in fully thinking we would be discharged from their practice because all her tests have come back normal and her development, except for her swallow, is on track...but I was wrong.  She wants another test run to test for PTEN syndrome.  I've avoided Dr. Google, at least for now, because I know it will likely be a few weeks before our insurance approves/denies it and then at least 6 more weeks once the test is run....so to save what little sanity I have left I'm not getting on Google.  I debated allowing the test to be run, but decided for a few reason's to do it...1. there is no poking involved, they can use the blood sample from her last test for this test.  2. if she does have this syndrome the doc said that one of the problems is an increased risk of early onset breast or endometrial CA.  So, I feel like I need to know if there is a problem because at least then we know to watch for the "side" effect problems.  3. I have this need to know or not know that something or nothing is wrong with her.  It's frightening because both her geneticist and her neurologist are convinced she has some type of syndrome.  When I asked today why she feels Aubrey has a syndrome she said some of her features/characteristics are "peculiar"...not sure how I feel about saying my kiddo is peculiar, but it is what it is I guess.  Tomorrow we head back to Akron for her follow up with her gastroenterologist and for another MBS.  The MBS worries me as we have never gotten good news from it...each time it has showed a decline in swallowing/increased aspiration.  I was all ready for it and then today's appointment kind of knocked the wind out of my sail.  Tomorrow is also Brooklynn's 3rd birthday, so good or bad results tomorrow is about B :) 

Fall fun

The girls are finally enjoying their swing set :). It's a nightly after dinner activity which is a pretty fun way to end the day.

DANCE :)

Mackenzie and Brooklynn started dance today!  I'm not sure what I have gotten myself into I fear :)  Mackenzie spent the afternoon dancing around the house and had her ballet slippers on most of the day.  She LOVED her class and was mesmerized the whole half hour class :)  I will get some pictures posted soon.  Brooklynn was funny...she didn't do much moving, but she stayed in her class and didn't cry or fuss.  I hope she will warm up quickly and really enjoy herself. 

Aubrey's 1 year stats :)

Aubrey had her one year check up on Friday.  For the first time in her life her development with the exception of her swallowing is considered NORMAL!!!!  It feels so strange to be so happy to hear the word normal when describing your child, but she's never been "normal" by the medical professionals.  So here it is...

~20lbs 15oz
~28 inches tall (the same as Brooklynn)

They still want us to work on getting her to take more food and less formula, but I knew that going into the appointment ;)  We also got the go ahead to switch to milk...Goodbye formula  :) 

Hopefully by the end of the month we will shake the failure to thrive diagnosis and get good news at her swallow study and truly be "normal" :)

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!!!

Update on us...

It's been forever since I've updated...our computer crashed and typing on the iPad takes FOREVER! The summer went by much too fast as usual. We had a pretty busy summer with lots of trips and not much down time :). We spent a long weekend in Nashville, a week at the outer banks, weekend at the Kentucky horse park, and a long weekend in georgia. Plus a bunch of day trips around Ohio. I hate to admit it, but I'll be glad to not ride in the car for a while! I've enjoyed my crazy schedule that allows me more time at home with the kids. I wish I could have dropped my hours sooner because I've really enjoyed all the extra time with them...even when they drive me nuts :). The kids are doing wonderful! Mackenzie is on her third week of kindergarten and absolutely loves school. I hope she continues to enjoy it. She starting to read and is working hard on practicing her writing. She's learned a lot in only 3 weeks :). I am still in denial that she is in "real" school. I think her favorite thing is riding the school bus! She hoped on the bus no problem her second day of school and asks to ride it every day. She had her first real haircut right before school started. She had about 6 inches cut off...this was HUGE for her! I love it, though it makes her look much to grown up. Mackenzie is still as girly as ever :). She starts dance mid September and has been practicing daily :). Brooklynn is the wild child :). I can't believe she is about to turn 3. She's gotten so much more independent, out going, and BOSSY!!! She is an opinionated girl and now that she can make it known, the whole world knows :). She is a goat... If it can be climbed she climbs it. Nothing is safe when Brooklynn is around!!! She finally decided that potty training was a good idea and for the most part except when she's asleep we are diaper free. She won't be starting preschool this year because with the way her birthday falls she has 3 years until she starts kindergarten. She's determined that she should be going to kindergarten with Mackenzie :). Brooklynn will also be starting dance mid September...this could be interesting as B doesn't not always care to listen to directions :). She loves to dance and will start dancing when ever she hears a good song, if no good music is available she makes up her own. I'm sure my neighbors have heard her rendition of the ABC song many many times! Aubrey is still keeping us on our toes...not because of medical stuff, for the most part, but because she is on the go ALL the time. My immobile baby learned to sit, crawl, pull to standing, cruise the furniture, and get from laying to sitting all by herself all during her 10 month!!! She's been practicing standing without holding on and I doubt it will be long before she walks. She's mastered going up the stairs...though not down yet, unless rolling down counts. She still sees her PT/OT/SLP, but only once a month now. Hopefully soon she will graduate from PT and OT. She's stuck with speech until she is able to swallow thin liquids and is eating more textures. Her swallowing is still a challenge. She's has a lot of aversions to things in her mouth and different textures, but we are working in it. She wants to eat big kid food, so she keeps trying. At least now she gags but doesn't immediately vomit :). She's a goofy kid. She is by far our grumpiest kiddo she's a smiley kid when she wants but definitely not an overly happy baby. Guess she's got a reason...her alter ego "Walter" still visits from time to time, but not as often. We are hoping to be discharged from most of her specialists at her year follow ups. A reason for her delays and failure to thrive was never really found. That's so frustrating for me, but I find comfort knowing nothing was found!!! So that's our update. Hopefully I'll keep up better!

Overwhelmed...

Sigh, I need to vent. These past 8 months have been a lot to take in. It's been exhausting, scary, frustrating, and down right draining. I feel silly for feeling so frustrated and overwhelmed. So many parents deal with so much more and I should be happy that for the most part Aubrey is okay, but okay is not what I want for my baby. I want to know what is wrong and how I can make it better. I'm so tired of going to specialist after specialist looking for answers only to hear "she looks good, but...". I'm tired of her being poked and prodded but no answers being found. We head back to Akron to see the neurologist and have more blood drawn for the microarray test for the geneticist tomorrow. Seeing the neurologist scares me. Even though her MRI was normal so many of her troubles point to a neurologic problem. From the low tone to the delay in integration of some reflexes to the fisting of her hands...so much looks like there is a neurologic base it scares me. Her therapists have some new concerns mainly due to the delay in her primitive reflexes integrating and her not using her hands like she should...one of the main reasons we are heading back to Akron. We added OT to her therapy regiment today. I'm happy to have the therapies to help, but the mom part of my brain just wants to pull her out and just let her be. The therapist in me knows better :). It seems like every time it looks like she is catching something happens and kind of slaps is in the face at how far behind she is in some ways. I had to fill out a Sensory Profile for her today after OT. I know the value of that tool, but filling it out for my kid sucked. She was also sent home with a sheet of things typical 8 month olds should be doing, I hate those things. I know she's behind but it put in perspective how far behind she is in some areas. I just want her to be "normal" for one thing but more delays seem to pop up every time she seems to be doing better. Sigh. We need a vacation from all things medical right now!!!