OK, now for a liitle more serious news

JollyRoger

Shared on Tue, 10/24/2006 - 08:21
We had to put Megan in the hospital again yesterday. She, basically, passed out in Stacy's arms yesterday while making a routine visit to her GI doctor. She has lost weight again and is back under 13lbs (12lbs 12oz). For those of you who don't know about Megan, here is the long and short of it (there are some old updates in the Off Topic section somewhere, you would have to go look for them-they have a little more info) She is my 8 month old daughter who has only gained a total of 3lbs 12oz since birth. The doctors have been perplexed by her condition and have yet to diagnose her with anything significant. She has had a feeding tube put in, through her stomach to eat. She can not take anything by mouth, due to her silent aspiration (liquids go directly into her lungs, without her coughing) and constant acid reflux and vomiting. They performed and MRI on her head this morning and we should get some results this afternoon or evening. Dr. Blumethal said she will remain in the hospital until they find out what is going on with her. He is convinced that it is, somehow, neurological. She had an Upper GI done last week and everything looked fine. If you are wondering, or wanting to ask "What is wrong with her?", all I can say is "I don't know, and the doctors are working on trying to find out." That has been my answer for about 7 months now and contiues to be to this day. They just don;t know what is wrong with her. They took 7 viles of blood last night, and will be doing a urine test, stool sample and sweat test (Cystic Fibrosis). They have called in a Neurologist to look at the MRI for any signs of Cerebral Palsey, or any other neurological disease.
This brings me to my next point, Stacy and I are at our wits end and are having a hard time with the whole "We don't know what is wrong with her." excuses. There are times when she does very well, but it goes bad, it goes real bad and all we hear is "We are trying to find out." Well, that does not help me in any way, shape or form. Especially, when trying to explain it to everyone who wants to know about her. My family and I are Christians, and believe that God has a wonderful plan for our daughter, as she has already touched so many lives, both on this site and here at home. People from all over the world know about her and are praying for her. God is definitely using her for a greater purpose, and for that, I am eternally thankful. Thanks for your time and I pray that this will all end soon and we will get a diagnosis so we can move on. Here are a couple of pics:








These were taken back in June, I believe. She has not changed at all since then. Actually, if anything, she has gotten thinner. She has grown in length by a couple of inches, but no actual weight being put on. Anyways, I'm rambling. Take care everyone.



END OF LINE


JR

Comments

stang503421's picture
Submitted by stang503421 on Wed, 10/25/2006 - 21:45
This one hits close to home - we had similar issues with my daughter over the first year of her life. There was no explanation from the doctors - ever. After a year, she began to gain more weight, grow more hair, and perk up quite a bit. She began to eat solids and you could see that she was a different little girl. To this day the doctors have no explanation. Keep your trust in God. Rest in the peace of knowing that God will not give you anything that you cannot handle. God bless you and your family Jolly - I wish I'd known about this sooner! Your beautiful little girl, you, and your family are in our thoughts and specifically in our prayers my friend. -stang
mrsleestak's picture
Submitted by mrsleestak on Tue, 10/31/2006 - 14:31
I hope they find an answer soon and our prayers are with you and your family. Erik
kweenie1969's picture
Submitted by kweenie1969 on Tue, 10/24/2006 - 08:34
I'll be keeping you and your family in my thoughts..
DSmooth's picture
Submitted by DSmooth on Tue, 10/24/2006 - 08:34
My thoughts and prayers are with your family as always Jimbo... D
biorod's picture
Submitted by biorod on Tue, 10/24/2006 - 08:36
I hope things work out with your daughter. She's lovely. All I can say is when doctors start telling you things, question them and read up on whatever it is they tell you. If it doesn't seem right, go with your gut over their diagnoses. They know about medicine but you know your family. Jared
A_Burn's picture
Submitted by A_Burn on Tue, 10/24/2006 - 10:41
My thoughts are with you too. Hope you find an answer soon.
Caesar's picture
Submitted by Caesar on Tue, 10/24/2006 - 13:42
my thoughts and prayers are with you, i hope everything works out. keep us updated

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