A week or two after he was diagnosed.Here are two emails the first from my dad and then the next from my mom from two years ago when we were in the hospital getting Jacobsen's diagnosis. I love reading them and hearing and remembering the hope and innocence we had that Jacobsen was going to be fine and the doctors would be wrong. Most of the time with Hodges I have zero hope in an earthly cure so it for some strange reason is really comforting to remember a time when SMA was not a staple in our lives. These two emails give a pretty good summary of what went on and what we were hit with that week in the hospital. I am so thankful I have these because I have found when my body is under extreme stress my memory is terrible.
This is from my dad to our family:
Jacobsen was admitted to Egleston Children's Hospital last evening for test. Ashley will of course be staying with him; both Ashley and Rich stayed with him last night. Today they plan to take blood, and he will be evaluated by a Neurologist and a Geneticist. The problem that we see with Jacobsen is that he is not moving his legs and arms or moving his head like he should for his age. Until now, we have attributed this lack of movement to his laid back disposition; this is unlike Kensington who is a "wild woman". Maybe Jacobsen will just be slower to develop, but the doctors are concerned. This could potentially be a serious problem, but we hope and pray that this is a problem that will correct itself as he develops or that can be corrected with diet and medication. Until the test and evaluation are completed, we wont know. Please keep Jacobsen, Ashley, Rich , and Kensington in your prayers.
This is from my mom to one of my cousins:
Thank you so much. They are both trying to keep it together. At this time the general consensus between the team of pediatricians, neurologists and geneticists is that he has a genetic disorder called Spinal Muscular Atrophy (SMA). Blood work will be done by the geneticists this am and tomorrow the neurologists will do an EMG which is an electrode test. Hopefully we will have some results from the neurologists soon, but the blood work could take up to 2 weeks for results due to DNA and other complex tests that will be done. The doctors don't like the way he is breathing and have him on oxygen which seems to help. If you look this up on the internet, it is very bad news. This is considered a neuro-muscular disorder. Of course the doctors arn't 100% sure, but I would say from what each team is telling them that they are 98% sure this is what we are dealing with. It is a degenerative disorder which means that things will only go down hill from here. Ashley has asked the big question, what kind of timeline are we looking at and the drs told them that according to what plan they choose for Jacobsen, ventilators, feeding tubes, etc. as they become necessary, most babies with this disorder might see their first birthday. Needless to say we are all devastated. Sorry for going on like this, but I really believe we can all pray more effectively if we are aware. Now we just have to hope that all the drs are wrong and that this is only a minor setback and he will be up and swinging the golf club right beside his daddy a year from now. As we receive results, we will keep passing them on. At this point they don't know when he will be able to go home. Ashley and Rich will have to be taught how to care for him before they can bring him home. Luckily with us living together we can try to help as much as possible. Kensington is being passed around and is loving all the attention. Yesterday at the hospital she kept wanting Ashley which is what Ashley needed. She is definitely a light in all this that is going on. Again thank you for your prayers, family is what sustains us at times like these.
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