Friday, April 20, 2012
Somara has been diagnosed with Juvenile Rheumatoid Arthritis. This is another chronic illness. People ask me constantly how I feel about her being sick and how I handle it. Well, I feel sad, helpless and discouraged. We can only treat her symptoms, there is NO cure for DiGeorge and she will have to deal with most of this stuff for the rest of her life... I handle it the best I can by continuing to ask God to give me strength, most days I am ok and some days I just feel down. Please continue to pray for Somara and please pray to give me the strength I need to keep taking care of my little angel.
Wednesday, April 18, 2012
I have had several requests to post on my blog to let everyone know how Somara is doing. Let me just start by saying God is so good! I posted in November that Somara was having a major heart surgery in Cleveland in December. The Dr went in and moved her left sub-clavian vessel off the the aorta and re-connected it to the carotid. Somara was having lots of problems choking while she was eating. The surgery went really well, she was in the hospital for three days and we were in Cleveland for 10 before they released her to fly home. We experienced a lot that trip that we had not experienced before. She is eating so much better and not choking with every meal! Somara has had her G-button since she was a year old (almost two years) and her gi dr took it out the first week of March because she was not needing it anymore. Somara cried and said, "Hey give me back my button, and then when we left she waved at the dr office and said, "Bye bye button, see you later." That was it she was over it. Now she tells everyone that asks "the doctor took my button" Somara has also had several different infections since November (upper respiratory, sinus, and others.) that have kept her just not feeling great so her DR called me two weeks ago and said they were increasing the medicine they give her during infusions significantly to see if it helps reduce infections. Her monthly infusions went from being about a 5 hr day to an 8 hr day. This makes for a VERY long day for both of us. The infusions still make her feel really crummy for about 72 hours after. Somara has been complaining about her right knee hurting for about 8 weeks. I took her to an orthopedic dr and to her pediatrician and they think she has juvenile rheumatoid arthritis. We are awaiting the blood results to find out for sure, but we will be making a trip to Scottish Rite Hospital in the next few months. Last but not least, Somara is having another surgery June 14th at Cooks Hospital in Fort Worth. This will be surgery number 9 for my sweet girl. She has a sub-mucous cleft pallet, which really means the muscles in the roof of her mouth are not formed correctly, a part of her DiGeorge syndrome. She will be in the hospital anywhere from 48 hrs to 10 days depending on how fast she eats and drinks on her own. Somara still goes to physical, occupational, and speech therapy twice a week. Please continue to pray for Somara and for wisdom for the Dr's to keep her out of the hospital!