Happy Thanksgiving!

Happy Thanksgiving to all of my wonderful family and friends! I am so grateful for each of you, for the support and strength that each of you lends, and for all of the laughter and happy times. I am most thankful for my two beautiful little girls and my husband. I am so blessed!

Jason and I are also extremely thankful for what seems to be a significant turn-around for Sophia. A week ago today, Jason and I were feeling very down as Sophia's eating, fluid intake and vomiting seemed only to be getting worse. We poured over the logs we've kept and the only possibility we could see is that maybe she still had a sensitivity to milk protein. Even though we had been told by many of the specialists we work with that she likely had outgrown this, we were grasping at anything to help our baby feel better. I contacted Sophia's pediatrician and GI doc to tell them our concerns and what we thought we should do as a next step. Both doctors agreed that this was a legitimate next step and Dr. Manini (GI) switched her from Pediasure to a product called Pediasure Peptide that does not contain milk protein and is mostly broken down already... similar to her Alimentum formula. As of last Friday, we cut out all dairy and switched her to the Peptide. She continues to take her medication for reflux. In the last week, she has only vomited once, she has taken 2 full bottles a day and her demeanor overall when eating has been happier, and much more willing. We are thrilled with this improvement and are so grateful that we have perhaps figured out one piece of the puzzle. She is at least getting calories closer to what she needs and keeping them in! She still is not taking in the level of fluids that doctors want her to but it is much, much improved! We have great hope for this as well!

Sophia Update ~ November 7, 2011

We heard from Dr. Manini today and received the results from the endoscopy and ph study that were done while Sophia was in the hospital last week. The tests revealed a lot and he feels certain at this time that we now know what is happening with our little peanut. The biopsies from the endoscopy showed that the tissue in her esophagus and small bowel looked healthy and was without inflammation. :) This also revealed that she does NOT have EE (the disease of the esophagus that was mentioned in earlier posts). :) There was some minor irritation seen in her stomach, but he was not concerned about this. He also does not believe that there is any indication of severe allergies that would be causing the vomiting. Sophia's score on the ph study was a "23". A normal score for children of her age and weight is score a 12 or less. So, while she is definitely experiencing reflux, Dr. Manini explained that they are not typical episodes of reflux. I'll save you all the confusing details and give you our final understanding...

She has been prescribed reflux medication in hopes of reducing the vomiting, however, he believes the vomiting is the result of the gagging and coughing she does while eating which ultimately stems from a neurological response. Children with neurological conditions, such as cerebral palsy, can have sensory issues (i.e. difficulty with textures, etc.). He believes this to be the case with Sophia. The reflux she is experiencing does not justify the surgery that had been discussed (fundoplication). We are very thankful for this. The issue of fluid intake is still of great concern and he wants to further discuss the possibility of a g-tube when he sees Sophia again in 4 weeks. From now until that time, we are trying everything in our power to get her to take in more fluids. We continue to syringe feed her several oz a day, however, we are also working diligently on teaching her to drink from an open cup as this was a suggestion from several of the professionals we are working with. It was also suggested that we begin transitioning her to Pediasure and so we have slowly begun introducing that. The goal is to have her off of Alimentum and completely on Pediasure in the next month. We pray that she is over her milk protein allergy and so far, all is looking good. If she does still have the protein allergy, there are other formulas that will need to be considered.

We continue to pray that our independent (and stubborn) little miss will help us turn things around and that she will start taking in more fluids... more willingly would be a nice benefit too! ;) Thanks to each of you for your continued prayers.

Sophia Update ~ November 5, 2011

Wednesday, November 2 ~ Sophia had a swallow study and upper GI test performed at Blank to see if there were any problems with how she was ingesting and moving food through her body. There were several people involved during these tests: a radiologist, a feeding therapist, and a speech and language pathologist along with several nurses. We were relieved to learn that both the swallow study and upper GI were normal. What a blessing! With that said, we continue to be utterly confused as to why she continues to vomit, gag, and refuse fluids. She is also beginning to refuse some solids which is very disappointing as that used to be something that was in her favor. The team offered many ideas of things to try... many of which we are already doing. Still, they were very helpful and we were very impressed with the speech-language therapist we worked with. On to the next tests...

Thursday, November 3 ~ Early Thursday morning, Sophia was admitted to Blank for an endoscopy and PH probe study. Once again, she was a trooper. Even though she had not eaten since 11pm the night before and was woken up early, she still managed to be her smiling, charming self. The photo above was taken before she went in for the endoscopy in which she had to be put under anesthesia. During the endoscopy, the doctor examined the tissue in her esophagus, stomach, and small bowel. He also took biopsies from each of these areas so that any inflamation or damage to the tissue could be discovered and studied. Along with the anesthesia, she had to have an IV, and they then put the nasogastric (ng) tube in for the PH study. The PH study basically measures the number of times that acid comes up into the esophagus. The ng tube was in for the next 25 hours and she did great with it... much better than we had anticipated. We will not know the results from the endoscopy and the PH study until Monday. After the procedure was completed on Thursday morning, we met with Dr. Manini. Per his observations during the endoscopy, Sophia's tissue in her esophagus, stomach and small bowel all looks normal. We were so grateful for this news!! He said that this rules out the possibility of the disease EE with 80% certainty. However, he said that the biopsies will reveal much more. It likely could still be reflux or possibly food allergies. After talking with him on Monday, we will make an appointment to consult with Dr. Manini again. He and one of his colleagues (Dr. Beltroy) who also saw Sophia in the hospital, talked with us at length about the possibility of needing to intervene if her fluid intake did not increase substantially in the very near future. While we will do anything for our baby and her health, Jason and I are beside ourselves thinking that she may have to have a surgery to place a g-tube (gastrostomy) in her stomach. We actually shared a room with another little girl (19 months old) that had just had a g-tube put in. Visiting with the family and witnessing the pain that this poor little babe was going through was more than enough to have us utterly terrified. We are praying with all our might that things with Sophia will turn around and she will be able to take in enough fluids and nutrients to stay hydrated and to continue gaining weight. All of this also impacts her in therapy which has us stressed as well. To date, she has made great gains in her motor skills (small to many, but GREAT to us)! We, along with her therapists, have obvious concerns about her continuance to gain skills if she is not taking in (and keeping in) the nutrients she needs to have energy to expend. Needless to say, the next month will reveal a lot for our little Soph... we just pray that some answers will come and the right choices will be made. As always, we want the very best for her.

Below are a few more photos from her hospital stay... we hope to not be back anytime soon!

Sophia getting ready to eat... checking out her new musical book and toys that Isabelle and Grandma brought her :)

Our sweet little girl was a very tired little girl. Here she is all snug with some lovies from home.

By evening Sophia had decided that it would be fun to play with the monitor she was hooked up to. For the most part, she did really well with the ng tube, not pulling at it much. The nurses did a great job of taping it across her face and back behind her ear so that it was not directly in her view. Thankfully, she left her IV alone too!

Isabelle loved crawling in with Soph in her hospital crib. Sophia lit up when her sister was there playing with her! We are so lucky to have such wonderful and loving little girls. Praise God for this gift :)

I will post again once we learn results from the tests and we meet with Dr. Manini to make a plan for our sweet baby girl. Thank you for taking the time to read about Sophia and her journey and for taking the time to care. I know that I can sometimes be a bit excessive in my writing! Finally, as always, thank you for your kindness and prayers.

Our baby is 11 months old!

Sophia turned 11 months on November 1. It continues to amaze (and sadden!?) me at how quickly time passes. I feel like only yesterday we were coming home with our little baby girl. It has been a wonderful and blessed 11 months with our sweet Sophia and I thank God for her everyday. She truly is a miracle and we are so lucky to have her as ours!

I tried to get her to "pose" with her pink bear for a "comparison" pic as I have in past months since she was born. She is no longer interested in letting pink bear just sit by her. This was the best I got! Need that faster camera!!

Happy Fall

Isabelle loves to help in the kitchen! She helped me make apple crisp and loved peeling the apples with grandma's apple peeler.

Sophia is not sure about this cold weather thing... not a fan of that hat, but I think she looks really cute!

A beautiful fall day at the downtown farmer's market!

Jason and his girls on Halloween... our little lady and our "fire-girl"!

Sweet Sophia

She really is the BEST big sister!!

Sophia's 1st Halloween :)

The girls always have fun playing in the leaves!