Melissa
I saw your post in response to Korrie's post @ ear tubes. I too have been through over 36 surgeries/proceedures with one of my triplets alone. My other two have had endoscopies, colonoscopies and ear tubes/adnoid removal. Some of the surgeries have been major 5+ hrs and some have been minor. One of my boys was hospitalized for 6 months initially and has short bowel synrome and has been diagnosed with a very rare progressive liver disorder called caroli's disease. He sees his many specialists regularly and has had more x-rays, CTs/MRIs/ERCPs/MRCPs, ER visits, blood tests and diagnostic proceedures than I could possibly count or recall. He also has celiac disease and familial poyposis. He is an extremely complicated GI patient. He has slight scoloiosis and spina bifida. He has chronic pain, major digestion problems, problems with fatigue, jaundice, needs OT/PT and vision therapy, has learning disabilities..... I am certain I am leaving a lot out right now too, I can't even remeber (and don't want to) all of the stuff he has had to deal with. It is very challenging to keep him and his brother and sister happy and occupied during all of the many 100s of car trips, waiting time and appts/hospital visits. I have to do this by myself 99% of the time, unless he is having a surgery that requires a hopital stay. My other DS and DD have also been greatly affected by their brother's troubles, but have developed remarkable empathy for others in difficult situations.

I don't really have a point to make, just to let you know that you are not alone in your challenges with your babies. What type of medical issues do your babies have ?

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I just saw your post again and saw the link with all the medical info. Hopefully for you and your kids it just gets better from here ! It is a unique challenge to have triplets and major medical challenges. I too feel incredibly blessed to have all three of my kids here with me. I was praying that all the major unknowns were behind us, but a whole knew set is in front of us instead. My son has an incredible spirit and would not be alive if he wasn't so fiesty.
I know we are in God's hands and that is an incredible comfort. God bless you and your sweeties They are adorable

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Lorraine- Thanks for the posting! It is nice to know when you're not alone. I was doing research on craniosynostosis recently, it is hard to have gone through so many procedures that are so different. See if I can explain: many times when people have a child with special needs or an illness, they become a specialist in one or two specific areas. I have had to become a specialist in over a dozen areas. Not implying complacency, but when you have done a specific surgery with one child, it seems "old hat" when the second has to go through it as well. If I had a child who had one specific disorder, perhaps you get used to the treatments or the surgeries. When you have had to send the kids back for so many diverse reasons, there is no anticipated outcome, and never knowing what to expect is the most difficult aspect of it. The stress becomes so overwhelming that it gets buried. If I allowed my feelings to flow, I would no longer be a functioning adult. My stress reveals itself at times, and I know that I deal with it the best way I know how. There is no answer for me, but I am glad I have FAITH, that I have a family who is eternally supportive, that I know there are others who have had to endure much worse. I feel guilty at times that I have three beautiful babies, knowing the outcome for others'. Then, when the next surgery is scheduled and I have to see my beautiful child endure more than I will ever have to...the weight is heavy. I'm not the actual one having to bear it, they are. In short, it stinks to have so little control and to have to rely on others' for something so important to you.

Now that I have vented, I feel a tad better. On the positive side of all of this, I have learned a lot in the last 3 years. I have a lot of knowledge to share, and I am thankful to have others' here to share it with. Even if I never really know if I have helped, it is nice to know I tried. Again, thanks for the posting. My kids story in brief can be found on the link below at Aaron's trach page. I need to do an update there, as there is a lot of story which unfolded since the last posting.

We have a check up on my sons vent tubes tomorrow, along with a hearing test. The appointments are never done! My DH broke his finger and needed surgery and pins, he has a follow up this Thursday. Along with the dentist, college classes, bills, housework, insurance phone calls, three 3 year olds, lions, tigers, and bears, OH MY! Its late and I think I'm giddy.

I totally understand the fiesty spirit! Your childrens Dx's are fairly foreign to me, I would like to know more about the specifics. Do you have a posting or site with medical info I can read? The more knowledge, the better. We are so very blessed. Good night! Thank you

~Melissa mom to Sarah, Ryan, & Emma. Post 26 weekers weighing 1lb 7 oz each. Visit our web sites at: http://www.tracheostomy.com/trachkids/kids17/emma.htm , http://www.gkmom.org