If you want to see how the whole casting process is done go to this website and they will show a video:
http://www.metacafe.com/watch/945693/mehta_casting/
This is exactly what Hadley had done.
Friday, April 11, 2008
Casting Day
Thursday was casting day! Hadley could not eat from 12 pm last night until after the process was done since she had to be put to sleep. We started our morning bright and early in order to get ready. We got there at about 7 am. Right away we went up to same day surgery and started preparing for the procedure. There was a lot of paper work, questions, and preparing to be done. The Dr's were running a bit late so after doing what we needed to do, they let us go for a bit. So we went down to the cafeteria and let Hadley play on the play set for awhile. It makes me so sad to see all those pictures and see how happy she was all that she could do and now she cant do any of that!
Around 9am, we went back to our "surgery" room and the process began. We changed Hadley into her gown and carried her to the preparing room. There they gave her some drugs to make her drowsy so it would be easier for them to take her away from Andy and I. That was very hard to see them carry away my little baby knowing what she was all going to have to be put through. That is when i broke down. They gave us coupons to get coffee because the procedure takes an hour. So, we went down and tried occupying ourselves for a bit to get our minds off it, which of course didn't work. We went back up to the waiting room and waited and waited and waited. And hour and a half later, the Dr came out and had us follow him. He said everything went well and Hadley was in the recovery room getting her cast trimmed and tucked while still sleeping. We followed him and he showed us the results of the X-rays of her spine taken right before surgery and the x rays of her spine while she is in the cast. Turns out we got bad news. Her spine has progressed from a 51 degree curve to a 74 degree curve!!!!! So, good thing we got her in right away to be casted because apparently the brace was not working! And getting into the higher degrees of the curve can start to be dangerous for her organs! The bad news is that yesterday when he thought her curve was only 51 degrees, he was more optimistic because any curve 50 and under is more likely to be corrected than anything over 50 and she was in that category just barely. But now she is not so the next option is surgery. They do not like to do surgery until they are at least 4 years of age so he's hoping this will keep the curve from getting worse until then and will buy us some time. He did say that Hadley is super flexible and he got the curve down to a 17 degrees while in the curve so that is really good. Usually they can not get it that low on the first casting! He did say he did not like the fact that she had a 74 degree curve but it is good that he got that must improvement on her! This was all very scary news and not taken very well on my part! Even though statistics say that any curve over 50 degrees will usually not be corrected, this doesn't hers wont. We had God on our side and he can do anything. I have a lot of faith that he will correct her spine! He has guided us very closely through all this and I trust he wont stop now! After all this was said and done we waited a bit longer for Hadley to come out of the recovery room. When she finally did, she was still asleep. She looked so sweet laying asleep in her bed with the IV still in her foot. She had blood in her nose from a tube they put in her nose that went down her throat. When she woke up she was very flemmy from the tube being in her throat. She cried for a bit not knowing where she was, then I got to hold her. It was hard at first to hold her with the big cast covering her body. But we adjusted very quickly to that! It was nice just to have her back in my arms! She was extremely out of it still from the anesthesia and remained that way for the rest of the day. Her cast seemed really high in her arm pits and her neck so they had to cut it down. To do this, they put ear muffs on her and used a loud electric saw thing! I couldn't bare to see her scream so i walked out and held my ears closed. Andy stayed with her. When I got back, they had to tape her up in which they tried doing while i held her. The whole thing was a horrible stressful process and the worst day ever! After all that we left and headed home. She slept most of the way. The rain was pouring down making it a very slow ride. We were just exhausted from all the stress so we pulled over to take a short nap and I tried feeding Hadley a bit. She was still so out of it and congested that she threw up! Poor baby! We finally got home after a long stressful drive in the rain and traffic. She was happy to be home, but so frustrated not being able to move.
Today I tried getting her down on the floor a bit, but she just falls over. She can't even sit! The cast is so heavy making it hard for her to move. She tries to crawl, but just falls over. It is so hard seeing her try all the things she could do before and not being able to do them anymore. She probably doesn't understand what is going on. This is the hardest thing for me to see. She was so proud of herself for being able to do all these things such as stand up and walk along furniture, crawl up one stair, etc. But now she can barely sit. It is like going back to taking care of a newborn! We have been taking baby steps trying to build her confidence. It has been a very hard, emotional, stressful day. Diapering Hadley is a huge challenge! Her cast goes way down her butt so I have been trying to diaper around it but I have to stick pads in there so the cast doest get wet. It is really hard. Her cast already got peed on so i had to untape it, wash it with a wash cloth, and blow dry it. She of course hated it and i felt so bad! I still think it stinks so I'm going to have to figure something else out! Our generic diapers are not going to work because they are not elastic around the sides enough. So, Jenna thankfully went out and got Hadley 3 different brands of diapers so we could test them out. Unfortunately there a lot more expensive than our generics, but we'll do what we have to do....
This is definitely going to take awhile for us all to get used to! If you could all keep us in your prayers, we would appreciate it! Pray that we can adjust and Hadley can get used to her cast! Pray for my patience because Hadley just cries all the time and wants me to hold her! Most of all pray that God works a miracle and corrects Hadley's spine! Id hate for her to have to be in this cast for a long time and to still need surgery. It was nerve wrecking enough sitting in the waiting room while she was being casted! But it is all in God's control. But I just know he will do whats best for our little baby! Thanks for keeping us in your prayers and staying updated! We have another apt in 4 wks, ill give another update then or maybe even sooner....
Around 9am, we went back to our "surgery" room and the process began. We changed Hadley into her gown and carried her to the preparing room. There they gave her some drugs to make her drowsy so it would be easier for them to take her away from Andy and I. That was very hard to see them carry away my little baby knowing what she was all going to have to be put through. That is when i broke down. They gave us coupons to get coffee because the procedure takes an hour. So, we went down and tried occupying ourselves for a bit to get our minds off it, which of course didn't work. We went back up to the waiting room and waited and waited and waited. And hour and a half later, the Dr came out and had us follow him. He said everything went well and Hadley was in the recovery room getting her cast trimmed and tucked while still sleeping. We followed him and he showed us the results of the X-rays of her spine taken right before surgery and the x rays of her spine while she is in the cast. Turns out we got bad news. Her spine has progressed from a 51 degree curve to a 74 degree curve!!!!! So, good thing we got her in right away to be casted because apparently the brace was not working! And getting into the higher degrees of the curve can start to be dangerous for her organs! The bad news is that yesterday when he thought her curve was only 51 degrees, he was more optimistic because any curve 50 and under is more likely to be corrected than anything over 50 and she was in that category just barely. But now she is not so the next option is surgery. They do not like to do surgery until they are at least 4 years of age so he's hoping this will keep the curve from getting worse until then and will buy us some time. He did say that Hadley is super flexible and he got the curve down to a 17 degrees while in the curve so that is really good. Usually they can not get it that low on the first casting! He did say he did not like the fact that she had a 74 degree curve but it is good that he got that must improvement on her! This was all very scary news and not taken very well on my part! Even though statistics say that any curve over 50 degrees will usually not be corrected, this doesn't hers wont. We had God on our side and he can do anything. I have a lot of faith that he will correct her spine! He has guided us very closely through all this and I trust he wont stop now! After all this was said and done we waited a bit longer for Hadley to come out of the recovery room. When she finally did, she was still asleep. She looked so sweet laying asleep in her bed with the IV still in her foot. She had blood in her nose from a tube they put in her nose that went down her throat. When she woke up she was very flemmy from the tube being in her throat. She cried for a bit not knowing where she was, then I got to hold her. It was hard at first to hold her with the big cast covering her body. But we adjusted very quickly to that! It was nice just to have her back in my arms! She was extremely out of it still from the anesthesia and remained that way for the rest of the day. Her cast seemed really high in her arm pits and her neck so they had to cut it down. To do this, they put ear muffs on her and used a loud electric saw thing! I couldn't bare to see her scream so i walked out and held my ears closed. Andy stayed with her. When I got back, they had to tape her up in which they tried doing while i held her. The whole thing was a horrible stressful process and the worst day ever! After all that we left and headed home. She slept most of the way. The rain was pouring down making it a very slow ride. We were just exhausted from all the stress so we pulled over to take a short nap and I tried feeding Hadley a bit. She was still so out of it and congested that she threw up! Poor baby! We finally got home after a long stressful drive in the rain and traffic. She was happy to be home, but so frustrated not being able to move.
Today I tried getting her down on the floor a bit, but she just falls over. She can't even sit! The cast is so heavy making it hard for her to move. She tries to crawl, but just falls over. It is so hard seeing her try all the things she could do before and not being able to do them anymore. She probably doesn't understand what is going on. This is the hardest thing for me to see. She was so proud of herself for being able to do all these things such as stand up and walk along furniture, crawl up one stair, etc. But now she can barely sit. It is like going back to taking care of a newborn! We have been taking baby steps trying to build her confidence. It has been a very hard, emotional, stressful day. Diapering Hadley is a huge challenge! Her cast goes way down her butt so I have been trying to diaper around it but I have to stick pads in there so the cast doest get wet. It is really hard. Her cast already got peed on so i had to untape it, wash it with a wash cloth, and blow dry it. She of course hated it and i felt so bad! I still think it stinks so I'm going to have to figure something else out! Our generic diapers are not going to work because they are not elastic around the sides enough. So, Jenna thankfully went out and got Hadley 3 different brands of diapers so we could test them out. Unfortunately there a lot more expensive than our generics, but we'll do what we have to do....
This is definitely going to take awhile for us all to get used to! If you could all keep us in your prayers, we would appreciate it! Pray that we can adjust and Hadley can get used to her cast! Pray for my patience because Hadley just cries all the time and wants me to hold her! Most of all pray that God works a miracle and corrects Hadley's spine! Id hate for her to have to be in this cast for a long time and to still need surgery. It was nerve wrecking enough sitting in the waiting room while she was being casted! But it is all in God's control. But I just know he will do whats best for our little baby! Thanks for keeping us in your prayers and staying updated! We have another apt in 4 wks, ill give another update then or maybe even sooner....
Tuesday, April 8, 2008
nooma - rain
This video touches me every time I see it. I just wanted to share it with everybody else! I think it such a good message! Hope you enjoy it!
Monday, April 7, 2008
Hiking at Pike Lake
Saturday was absolutely beautiful and we got a chance to get outside and enjoy it! We went to Pike Lake and did some hiking! We hiked up to the tower, in which I didnt know they had. It was a beautiful sight! I have to say though, I did not go up all the way. I guess Im a chicken, but I did go up more than half way and the view was still beautiful. Andy and Mianna went up all the way and Andy said he could see Milwaukee! Wooh.
I carried Hadley on my back and Andy carried Mianna one way on his back. Then when we got to the tower, Mianna's legs were hurting from being sqwooshed in the carrier so that was it for that. She walked back and surprisingly made it the whole way back. I think she's too big for the carrier! Not to mention Andy's shoulders were hurting him from carrying 34 lbs on his back! So, I guess when we do hikes that is not stroller friendly, she's just going to have to hike! That might call for very slow shorter hikes :)
It was a lot of fun to get outside and enjoy God's creation! If the weather permits, we are already planning another hike for this coming Sunday. It's a cheap great outing for the whole family :)
I carried Hadley on my back and Andy carried Mianna one way on his back. Then when we got to the tower, Mianna's legs were hurting from being sqwooshed in the carrier so that was it for that. She walked back and surprisingly made it the whole way back. I think she's too big for the carrier! Not to mention Andy's shoulders were hurting him from carrying 34 lbs on his back! So, I guess when we do hikes that is not stroller friendly, she's just going to have to hike! That might call for very slow shorter hikes :)
It was a lot of fun to get outside and enjoy God's creation! If the weather permits, we are already planning another hike for this coming Sunday. It's a cheap great outing for the whole family :)
Wednesday, April 2, 2008
Update on Hadley
Just wanted to give all a quick update on what is going on with Hadley. After doing some research on infantile scoliosis I found a great website with a lot of information and a support group that I joined. I have learned a lot including that a brace will not correct Hadley. Andy and I were under the impression that in 3 months we would go to the Dr and if the brace was working, we would see improvements on her spine. However, we were wrong. Andy talked to the nurse and she informed us that we are on a long journey! If this brace works correctly all it will do is stop her spine from curving more and Hadley will most likely be in a brace until she hits puberty when either a brace will correct her spine finally or they will do surgery! I was shocked after hearing this! Definitely not what I wanted to hear! With all the research i was doing, I found a newer study of casting designed specifically for infants. I realized that this is what most of the infants and toddlers were doing that belonged to my support group. This Mehta(sp?) casting is only performed at certain hospitals. Unfortunately Children's Hospital of Milwaukee is not one of them which explains why Hadley is most likely in this brace and not doing that procedure. But fortunately, Shriners Hospital in Chicago does have this infantile scoliosis early treatment plan and is trained in this casting procedure. The Mehta casting is a newer alternative method used to hopefully take the place of needing surgery. And for a lot of the families, it has been working wonders. Ive read a lot of stories of children going from 40 degree angles down to 4 degree angles! Awesome news! So, we started the process of getting into Shriners and was told we had to first be accepted, then it would take 6-8 wks to even get in! With Hadley being at a 55 degree angle with rotation, we really didn't want to wait that long since a brace is not known to stop the spine from rotation. One of the mom's in our support group gave us the nurses direct number and said to call her with our situation and maybe she would get us in sooner. So I did this and God answered our prayers! Hadley has an appointment next wednesday at 10 AM in Chicago! I am just amazed how God is in control of all this and is on our side! What an amazing God! So, that is where we are at now. I saw how the whole casting procedure is done on the infantile scoliosis website and it is really scary! Made my stomach sick! But a lot of the mom's comforted me in telling their stories. Plus in the long run, it would definitely benefit Hadley IF they even decided to do it. Id rather go through the casting process for hopefully only a couple years of Hadley's life, in which she wont even remember, than to have her in a brace until she's 13 or 14 and still needing either a brace for correction or surgery! One thing Shriners did say is that Children's Hospital of Milwaukee is one of the best hospitals out there and to not doubt their treatment. We would and still may just stick with them. The main reasoning for going to Shriners is because of their Specialization and training in Infantile Scoliosis, which Children's of Milwaukee does not have. I will keep you all posted to what they say about her. Only God can correct Hadley's back! I pray that his will be done! But I also pray for the desire for him to correct her back! Dr's say since she progressed from a 30 degree angle to a 55 degree, that her back will most likely not self resolve, but I still hope and pray that it will. My prayers are that we will go down to Chicago and see that her spine has gotten better! Please just pray for her and our next appointment in Chicago! Thank you again!
Our trip to the Domes
Yesterday, I took the girls to the Milwaukee Domes since I had a long day at work. They had a blast exploring the 3 different domes. We went from the hot humid jungle to the cool desert to the beautiful colorful spring dome! Mianna has been reading about The Garden of Eden in her bible so it was a perfect oppurtunity to view what the Garden of Eden might have looked like and to retell the story giving them a better picture. I picture it like the spring dome. It was a lot of fun and cheap too! :)
Subscribe to:
Posts (Atom)