Update on Paisley Hope and Parker

We'll we have gained 1 pound in a month, which is fabulous concidering... I take her to feeding therapy once a week in Enterprise and we are progressing and the surgeon is happy.. She is such a strong willed little thing and that's what has gotten us this far. Feeding therapy is so HARD and takes alot of patience... In her defense she does take feeds all night so when she wakes up every morning she is gagging at just the smell of my coffee, it's really sad. She can go all day w/out eating and she'll smell dinner cooking and she begins gagging after she haden't ate a thing all day.. She is a 2 year old too so I know they are pickey eaters..I just wish there was a quick fix..The surgeon is happy with our progress so we are still going to work really hard to get her wait up a little bit more. We are not wanting to have surgery so right now we are not on bolus feeds we are just on the pump at night..At one point they were concidering putting a 24 hour backpack on her and that would just really set us back..Our feeding therapist is working so well with her and we are so thankful for her.. She has come so far and we know that god is working through her.. We have new AFO braces that seem to give her alot of support in her ankles. She is walking and running so much better..

Parker and Paisley have both got the crud and Parker has strep throat.. Another day devoted to a dr's office.. We are just so thankful for each therapist and dr. that god has guided us to. Parker is such a great big brother she will do things for him so much quicker than she'll do for me...

This is another test that she had done to see how bad her acid reflux was.

Paisley Hope's Arrival

We are a family of 4 that has learned so much about patience and peace.. We had our first son Parker and then we had Paisley Hope which was born at 31 weeks. I knew that something was wrong with her around 29 weeks. She was such an active baby and she went from being so active to nothing. I would go to the hospital and they would send me home drinking orange juice. The sugar in the juice would get her to moving for sure. I was so insistant that something was wrong with her and everything on their monitors checked out fine. So I was sitting at work the morning after I had stayed at the hospital the night before and I said I will eat these hot grits and if that doesn't do the trick I'm gonna go right back down there. So I called my doctor and told him that something was wrong I could just feel it. So he met me at the hospital and we did an ultra sound and she was already in distress, w/in 30 minutes I had a baby girl. Not expecting all of this to happen the sweet little thing didn't even have a name for 2- days. We have learned so much about life through this journey..We spent 5 weeks in the NICU and then headed home with an Apnea monitor which was really scarey. There would be so many times she would just decide to quit breathing which then scared the life out of us. This alarm is so loud that is sounds like a smoke detector going off in your ear. We had been so anxious to go home but then when the time actually come we weren't so sure that we were ready.I couldn't even hold her for 2 weeks..At the time it just didn't seem fair, I was seperated from her at birth and then the first time I laid eyes on her in the NICU she was on a venalator and the doctors told me they didn't have a crystal ball and they could not tell me if she would make it..Oh how aweful those words were. That was when I hit my knees and began begging god to please spare this little life.So were home and I just knew something was not right. I had noticed she had a few developmental delays. Off to Children's Hosp. we go..The Dr.'s never suspected anything was wrong w/ her but said a mothers instinct doesn't lie.So we do an MRI and it showed an excessive amount of white matter on the brain that is know as leukomalasia (I know the spelling is all wrong).. Total shocker for all of us including the doctors.So know we always have double pneumonia so we're transported to UAB and at this point we're told the swollowing study indicates we are asperating on thin liquids.We have to have a G-Tube placed along w/ fondo surgery.We come home on a feeding tube and told we may have something known as Leukodystrophy. The Dr. said whatever you do don't google it. So I couldn't get home quick enough to get a hold of my computer and we regreted it to this day. We did not have a diagnosis so why look into it like I did. About 8 mths later our Leukodystrophy panel came back negative (thank god).We are seeing several therapist and they seemed to think she needed SMO's (ankle braces).We have made countless trips to B-Ham and could not tell you how many different types of docs we've seen. We have been transported by ambulance numerous times.So we do a repeat MRI last week and it showed that the brain damage is not progressing. (Praise God) We also were told we didn't have to bolus feed her during the day we only have to put her on the pump at night because she passed her swollowing study.She went so long w/out eating that I'm having such a hard time trying to get her to eat.We are working w/ someone weekly and I'm seeing so much progress. We still don't have a diagnosis, but you know I'm so thankful for every Dr.,nurse, therapist and every trip we've had to make becuase not only has it helped Paisley Hope but it's brought us so much closer to god. Though having to resign from my job, I am still so thankful. I had 10 years in so at least I can freeze it..Our little man Parker has been so sweet and patient threw this journey with us.We had never left him before he was our life so this was a huge adjustment for him as well.This baby has been prayed for in so many places and I'm so thankful for each prayer that has been sent up for her. She is just a living testimony and as my pastor referred to her as "our little angel here on earth"..

POWERFUL PRAYERS

So we've been to quiet a few doctors since the last post..Paisley Hope really went threw the mill last week.. She saw like 5 doctors in one day. We arrived at her first dr. on Monday and he wanted to do a sleep study on her before she was put to sleep for the MRI the next day.. She went threw so much in that itself.. The next day we had our MRI done on the brain and PRAISE GOD the brain damage has not progressed in 6 months..She will no longer be bolus fed, she is only on the pump at night. We are seeing a speech therapist and she is doing amazing things w/ Paisley Hope as far as getting her to eat. I take her once a week to see this therapist and there is nothing but improvements being made.. Oh we are just so thankful for everyone in her life, the doctors, the nurses, the hospitals, friends and family... We are just blessed with what god is doing with our family...

Parker is playing soccer this year and he is such an AGRESSIVE little player.. This little guys play tough.. They have absolutly no fear of anything.. Now we are easing into the hunting season and I just get so nerveous at the thought of him being in the woods with all the snakes crawling.

This is all so new to me...There are so many new chat sites to visit and so little time. A friend of mine suggested that I try blogging about Paisley Hope, because we are always going to B-Ham and it is hard for everyone to keep up with us and like I said earlier there is just not enough time..