Update on Elijah's medical stuff and BIG changes....

Well we have been traveling like crazy for the past two weeks. Elijah saw the Developmental specialist, pulmonologist, and cranial tech last week. This week we did the eye doctor. All of these appointments require travel, so I am tired, and broke. I actually spent almost $100 in gas in just three days last week!! My husband and I recently separated so now I am sort of doing this on my own. It is extremely hard! We have had to leave our home and are currently staying with relatives, I am so wanting to rent a small house that has come available! I want my children to have a nice home, I want things to be normal for them!

Back to Elijah, the developmental specialist said that Elijah is showing development appropriate for a 5-7 month old child in most areas. I didn't like to hear this since Elijah's corrected age is 9 months. It was also confirmed that Elijah has "low tone" mainly in the upper part of his body, this is why he can't sit up yet and why he hates to be put in his Bumbo. This low tone is caused by a brain injury he suffered either before birth due to the TTTS surgery or during or shortly after birth. No one has said Cerebral Palsy yet, but I'm waiting for that shoe to drop. Elijah's Pulmonology appointment went well, as did cranial tech. Elijah's eye doctor wants to do Botox Injections for his eye to see if that may help the crossing over time, otherwise it will require surgery because it can't be corrected with glasses.

Some days I feel so hopeful for Elijah and for my family's situation and others, like today, I feel like I could just plunge into the depths of despair, but I dare not, because there are so many little people depending on me.

Please keep me and my children in your prayers for our situation, medical and financial. My 3 year old is having such a hard time dealing with everything and is showing some anger, which I am sure is normal.

I know I have to keep my eyes on Jesus, not looking to the right or left, there are many days I feel so alone and like he is the only one who cares about me, my children, and our situation. Sometimes I just feel so lost in this world of staying at home, medical appointments, therapies, and now dealing with the sadness and loneliness of a broken marriage.
Please keep us in your prayers....

Hello everyone! Well time seems like it is moving so slow now! Elijah is doing well and eating, and he is tolerating his feeds. He is retaining fluid though, but his urine output is great. I hope nothing is wrong. I have decided that I am going to push really hard for a monitor and maybe even oxygen for the trip home. I can't believe these people would actually send him out of the hospital without this equipment. He is still having bradycardia episodes where he drops his heart rate and stops breathing. From everything I read and hear this may not resolve for another month or so. I'm sure the insurance is pushing for discharge since he has had his surgery, not that I want him to stay in the hospital, I just refuse to travel 12 hours (we'll drive 6 stay overnight and then drive 6 more) without the equipment. He had a episode last night, he tends to do it in his sleep. After all we have been through I refuse to put my baby in harms way due to the ignorance of the hospital staff and insurance company. When it all boils down to it, it is all about the money, I have learned that much from this experience!