Saturday, August 23, 2008

What a Month!!

The last month has been a series of ups and downs. We feel like we have been on quite a roller coaster with Miss Lily Marie. The fabulous news is that she is doing GREAT right now!! On our last post we were very perplexed by the enormous amount of pain she was experiencing. Finally after 2 ENT visits, 1 GI Nurse Practitioner and 1 Pediatrician we had a breakthrough. I have learned through this whole experience to not be afraid to be a pain in the rear to the doctors! I call them all the time! The GI nurses and doctors know us very very well! I called the GI nurse and told her that Lily was in pain and on Tylenol 24 hours a day. The GI doctor heard that message and he finally made the decision to put her on Keflex. Within 24 hours Lily was a completely different baby. Praise God!

We think whatever infection that had invaded her body had been manifesting for longer than we realized..probably about 6 weeks. Lily had not gained weight in 6 weeks and over the coarse of that time she had stopped wanting to sit, put pressure on her legs, put pressure on her arms. Once on the antibiotic she gained 1 lb in 2 weeks, grew 1/2 inch and her head grew! After gettting off the Keflex - within 3 days it looked like her g-tube was having problems again. So she is back on Keflex for another course. This time we have been using some probiotics in her formula with the hopes of not killing off all of the good bacteria from the antibiotics. We have also changed brands of tubes for the second time. We are currently using a Nutraport tube. The tube is much flatter and fits snuggly against her skin. We are hoping this will help with all of her granulation that forms under the tube. We don't like the extensions that go with it - they are hard to pop in..but if the tube is better...we can deal!

Lots of other wonderful things are happening now that Lily is feeling better. She got her orthodics and when in PT she is standing (while assisted) and doing all sorts of fun things. Lily has to wear shoes with the orthodics. Her feet are still so small. We had a pair of Ava's old baby shoes that fit perfectly with the orthodics and socks. Seeing her with shoes on makes her look so much older than before.

Lily is consistently signing "more" and we are working on Mommy, Daddy, Eat, Drink and All done. She really doesn't seem too interested in signing..but we do it anyway. She loves to clap and is putting things in her mouth a lot. Both our OT and PT are working on Motor Planning and Fine Motor skills. Last week out of no where she started to pivot while sitting! She did it all on her own. We were thrilled! Lily is also trying to stack blocks and manipulate toys. We really feel like cognitively she knows what she is supposed to do with a lot of her toys!

Lily is also starting to be more affectionate with us. She cuddled with me at bedtime and I thought I was going to burst into tears! It was such a wonderful moment. Those small moments of wonderfulness makes all of the bad stuff go away.

We are very excited for the month of September. Jason, Lily and I are going to Boston for the 2nd annual 1p36 Deletion Conference. We cannot wait to meet the other families and other children and to hear the speakers. This trip has been made possible by all of the generosity of our amazing family and friends. Their support both financially and emotionally helps us each and every day.

Lastly - today something very exciting happened! A few weeks ago two of our therapists told me about some $$ that the state had available for people who attend conferences regarding their child's special need. They strongly encouraged us to apply for this grant. So- I applied for a fund called the Family Involvement Fund. It comes out of the Indiana Institute on Disability and Community. I found out this morning that we were given a nice grant to assist us toward the expenses of our trip! This will help so much! Now some of the money that we were going to be using for the trip can go towards additional services for Lily such as Hippo therapy(Physical Therapy with the use of a horse) and/or the purchase of equipment for Lily such as a new stroller, etc.

The older kids are going back to school. Ella started kindergarten and Nathan is in 2nd grade. Ava goes back to preschool in September. Lily has been so patient going from one back to school event to another. She sits for short times in her umbrella stroller which really makes quick trips much easier for Mommy! All the kids love pushing Lily which is also a big help!