So the relief of a diagnoses has begun to subside and the reality of the diagnoses is beggining to sink in. I pushed and pushed through the last 16 months of E's life to reach the point when all her health issues would make sense and I would be validated. It has happened now and I can say that she has VCFS aka Velo-Cardio-Facial Syndrome and partial DiGeorge Syndrome and it explains intricately every health problem she has ever had. It is a good feeling to know she will be able to get SSI and MediCal and that we will finally qualify for the assistance that we need in order to get her the medical care she needs. But then there is the pain of knowing that your precious child has a chromosomal disorder that is irreversible and permanent. My baby girl is considered "disabled" now and that is hard to adjust to. I mean, she will face challenges for the rest of her life, hopefully less and less as she ages and it will be D and I's responsibility to fight for her in the school systems and the medical realm. With D's job moving us so much, it will be important to fight to be allowed to stay were she is already getting great care.
I think in every situation like ours where there is a true mystery involved in your family member's health condition, you go through the euphoria at the diagnoses at first. You run around meeting all the doctors and you research the diagnoses on the internet until you know more than you should and you are just so relieved that you were right all along and it feels like a massive weight is lifted off of you. Then the reality of what the diagnoses holds starts it's way into sinking in. You have to face what it means for your loved one and for how long and what it will mean in your own life in taking care of them to the best of your ability. Then, in our case, you have to go through a sort of grieving process. Even though E is not dying or severely ill, she is permanently affected by this condition and it will be something that will make her life more challenging in multiple areas. Her development is slower, she speech and hearing is slower and impaired, she will have learning disabilities, she has a tube in her stomach to help her put on weight that will be there for an indefinite amount of time, she has a very high chance of mental illness. Also, all of her own children will have the 50% chance of having the same condition as she does on a much greater scale that could lead to their deaths within weeks of birth or at least heart surgery by weeks to months old. It is scary. Granted, I have been taking care of her without that information for 16 months already and so not much is going to change with the information except more help and less questions. I do however have to get her through these recurring infections and the failure to thrive with D's help and it has been really hard on us. Having a sick child takes a toll on every aspect of family life.
All in all, the relief is quieting down more and more and the depth of what it all means is setting in. We are now facing what it means and what we need to do. Good thing we have our faith in God to get us through because this is what faith exists for. To give you something to trust in and lean on and hope for when you know you have reached the end of your power to control or change things, especially when it is about your beautiful baby. And to think, she has the mildest version of this condition!
Sunday, February 22, 2009
Monday, February 9, 2009
ANNOUNCING...
Z!!!
Born on Feb. 6th, 2009
At 12:09 pm
Weighing 7 pounds, 8 ounces
and Measuring 20 1/2 inches
He is WONDERFUL and healthy and I will get pictures out soon!
Born on Feb. 6th, 2009
At 12:09 pm
Weighing 7 pounds, 8 ounces
and Measuring 20 1/2 inches
He is WONDERFUL and healthy and I will get pictures out soon!
Wednesday, February 4, 2009
Update on Life- SERIOUS
Okay, so, I have no idea where to even start...
On Thursday, January 25th, I took E to her pediatrician because she was just not getting over a really nasty sinus infection. When I got there, I told her that I had an appointment scheduled for E at Loma Linda for her GI specialist the next morning. She told me that were it not for that appointment, she would personally hospitalize E, but she wanted her to go to that appointment and would call the doctor herself. Due to her feelings about hospitalizing E and the fact that she would be contacting the specialist, I took D's advice and packed a hospital bag for two of us just in case they admitted her up there at the children's hospital. Well, lucky I did because as soon as we sat down with the specialist, she asked me how far along I was and if there was enough help at home for my older children and I told her we had taken care of it all. She admitted E that evening to Loma Linda Children's Hospital and they started i.v. treatments of antibiotics and started watching her eating and weight and dirty diapers like a hawk. They also started running tons of tests to try to start honing in on what has been creating her eating, weight gaining, and development problems. After a week and a half, they decided to put in a G tube to start doing feedings through the night while she is asleep as a supplementation to her normal eating during the day. That went in today. They also got test results back on her chromosomes and found that she has an abnormal "fish" or chromosome 22 and it means that she has a very mild form of DiGeorge syndrome. I haven't been brave enough to research this disorder yet, but I do know that the doctors already checked to make sure that it hasn't caused heart damage, immune system damage, or calcium deficit and she was in great health on in the heart and calcium areas. They did a swallowing study to make sure she is swallowing well and were able to see why her food has always leaked out of her nose when she eats. There will be more clear information on that in a few weeks when we go back with her as an out-patient to the ENT's (Ear, Nose, and Throat specialists) to run their own tests and get a look. They will be doing a scope to see what is going on in her sinuses and get a better look in her ears. We will also follow up closely with her GI specialist and will be seeing her geneticist. All that and I am having my c-section on THIS Friday. In fact, the only reason I am home now and D is with E is because I had to book it to my OB to get the blood work and pre-admission paperwork done this afternoon. I couldn't put it off any longer and had to take care of this part of things. I will have one full day home before I am in the hospital to have my baby and I am crossing my fingers that D and E will be home by tomorrow night so that D can be there when the baby is born. Otherwise, my mother-in-law will be in the room and D will still be at Loma Linda tending to E. It is a crazy mess, but I am feeling so hopeful now that someone has found a significant key to what has done this to E. Please send TONS of prayers our way as we are all in desperate need of them. They have held us together thus far and I couldn't be more thankful to God than I am right now. God bless.
On Thursday, January 25th, I took E to her pediatrician because she was just not getting over a really nasty sinus infection. When I got there, I told her that I had an appointment scheduled for E at Loma Linda for her GI specialist the next morning. She told me that were it not for that appointment, she would personally hospitalize E, but she wanted her to go to that appointment and would call the doctor herself. Due to her feelings about hospitalizing E and the fact that she would be contacting the specialist, I took D's advice and packed a hospital bag for two of us just in case they admitted her up there at the children's hospital. Well, lucky I did because as soon as we sat down with the specialist, she asked me how far along I was and if there was enough help at home for my older children and I told her we had taken care of it all. She admitted E that evening to Loma Linda Children's Hospital and they started i.v. treatments of antibiotics and started watching her eating and weight and dirty diapers like a hawk. They also started running tons of tests to try to start honing in on what has been creating her eating, weight gaining, and development problems. After a week and a half, they decided to put in a G tube to start doing feedings through the night while she is asleep as a supplementation to her normal eating during the day. That went in today. They also got test results back on her chromosomes and found that she has an abnormal "fish" or chromosome 22 and it means that she has a very mild form of DiGeorge syndrome. I haven't been brave enough to research this disorder yet, but I do know that the doctors already checked to make sure that it hasn't caused heart damage, immune system damage, or calcium deficit and she was in great health on in the heart and calcium areas. They did a swallowing study to make sure she is swallowing well and were able to see why her food has always leaked out of her nose when she eats. There will be more clear information on that in a few weeks when we go back with her as an out-patient to the ENT's (Ear, Nose, and Throat specialists) to run their own tests and get a look. They will be doing a scope to see what is going on in her sinuses and get a better look in her ears. We will also follow up closely with her GI specialist and will be seeing her geneticist. All that and I am having my c-section on THIS Friday. In fact, the only reason I am home now and D is with E is because I had to book it to my OB to get the blood work and pre-admission paperwork done this afternoon. I couldn't put it off any longer and had to take care of this part of things. I will have one full day home before I am in the hospital to have my baby and I am crossing my fingers that D and E will be home by tomorrow night so that D can be there when the baby is born. Otherwise, my mother-in-law will be in the room and D will still be at Loma Linda tending to E. It is a crazy mess, but I am feeling so hopeful now that someone has found a significant key to what has done this to E. Please send TONS of prayers our way as we are all in desperate need of them. They have held us together thus far and I couldn't be more thankful to God than I am right now. God bless.
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