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....
The continuing journey of Elijah surviving triplet brother of David and Lucas, born 16 weeks to early due to Twin to Twin Transfusion Syndrome, he is a NEC survivor, and weighed 1lb 8oz at birth. This blog starts during Elijah's hospitalization and continues to the present time. Thank you for praying for Elijah! If you have time I would love for you to leave a short comment, and click on the follow me link in the sidebar, check back often for updates!
2 comments:
My friend Keep your eyes on Him!
"Therefore do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble of it's own." - Matthew 6:34
My dear hold on to HIM and things will be perfect. all my love and prayers are with you.
My daughter Enya has lower truncal tone, she only started sitting properly at about 14 months (11 months adjusted). I must admit though here in Germany we are discouraged from propping our children into sitting (theory is prop sitting is bad for their backs- they will sit by themselves when their muscles are strong and coordinated enough for it), so the children here tend to sit later anyway- most learn to sit after they learn to crawl.
We are back in PT after a brief break due to Enya's low tone affecting her walking- broad based gait pattern. I must however add she walked at 17 months (14 months adjusted) so completely in normal range.
I have asked though and no one believes Enya has CP, her basal tone is just lower than normal but she has learnt/is learning to compensate for it.
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