Hadley adjusting to her cast

I can stand again!


Stuck!


My favorite position!

Hadley is doing really good with adjusting to her cast! When she first got her cast, she couldn't sit up and only wanted me to hold her, but now she can sit up(but she falls over easily), crawl, and even pull herself up to stand again. She's doing great. I added a little video of her of how she just started crawling and her technique in doing it! Its just amazing how she learned to readjust her life according to her cast. It took her awhile before she started crawling because she really can't bend her legs very easy and when she crawled, her legs would just fall flat so she didn't go far at all. But now as you see in the video, she learned how to do this little hop thing in between all her 'steps' in order to keep her legs from falling flat! Pretty clever! She still doesn't go very far since lugging around her cast is pretty tiring, but she gets to where she needs to go, then she falls over and lays on her back. Or, if she wants to be picked up, she crawls over to us and lays her head right on our feet. It's too cute. She loves to walk when you hold her hands. I think if it wernt for this heavy cast, she'd be walking or close to it... The biggest thing that frustrates her, I think is the fact that when she's in the crawling position, she can't sit back up; she has to fall on her back and she's down for good until we set her back up. She used to sit up by herself, but now she tries and tries, but she just ends up crawling backwards... She's a trooper though! She's definitely going to be a strong little girl!

God is using Hadley

Ive been meaning to sit down for awhile now to write this post. Free time is limited lately! I just wanted to write some thoughts about Hadley's situation. Bear with me, my mind is random and gone a lot of the time lately. So, if I'm not always making sense, that would be why.

Over the last month dealing with Hadley's situation, God has really shown how He is guiding us! In so many ways, He is using Hadley's situation for his Glory. It brings tears to my eyes to see how God is with us every step of our way! He is an amazing God!

You can look at Hadley's situation for the negative. Of course the negative is the obvious: she has a curved spine, has to wear a cast, is limited to movement, and no baths. BUT there is so much more than the negative in this situation. God has shown me all the positives in Hadley's situation and it has helped me get through my days. I just want to share a couple situations on how God is showing us that he is leading us every step of the way...

It all started with Shriners! First of all, we had this brace on Hadley that we got at Children's Hospital of Milwaukee. Then God lead me to find a support group for infantile scoliosis on the Internet. I didn't even really have to search. He brought me right to it! Then with talking to other mom's with kids in the same situation, not only did I get support and relief that I wasn't alone, but they gave me so much advice and information, I didn't know what to do with it all! They informed me that all their children were in this new casting for infants and Hadley should be in it too! They gave me places where they did this casting and gave me all the numbers and names of the people I needed to get in contact with! I was thinking , WOW, these people are nice! So, that is the first way God provided for us: he gave me a support group that he knew I was going to need. And through the support group He gave me information that we needed!

Then, I called Shriners and they said they have to send an application and then we have to be accepted, then it takes 6 wks to even get an apt with them! I thought, That's a long time! But I was OK with it... until some of the mom's explained to me that time is very important and her spine could curve more, which meant danger to her organs! They said, call this person and talk to her and tell her your situation! So, I had Andy do that, but she was not in, so he left a message 2 days later, she called me. I told her our situation and right then and there, she made an apt for Hadley for the next wk. We bypassed all the application processing and the waiting 6 wks for an apt! Theres another way God has guided us! How amazing we got in so soon! God knew that we needed to get Hadley in there! He knows her future and he knew her spine was only getting worse in that brace. I'm so thankful that he knows all this stuff because just think... if we waited 6 more weeks to get her in there, she could have had major damage to her organs since in only one month, her spine went from 50 degrees to 74 degrees. God knew that and he was watching out for her! That just amazes me how He works!!! As a parent, it bothers me a lot not knowing Hadley's future and what is going to happen with all this, but God has showed me that He does know her future and He will take care of her! I have to trust him because I know he is protecting her! So, right there , in those 2 situations, God has shown us that he is with us and that we are not in this alone!

So, then we went down for Hadley's apt the following Wednesday. The hospital was amazing! So much better than Children's of Milwaukee. They showed us that they cared so much about Hadley and her needs. God knew that's what we needed! Then the next day, they casted her! Good thing He got us in there so soon! The weird thing is that on Wednesday morning before we left, I had this strange feeling that I should pack some extra things for Hadley in case they wanted to cast her the next day. I thought in my head, "oh, I'm just getting hopeful." But this feeling would not go away. So, I fought with it a bit and I ended up just packing some pajamas, extra food, and an extra outfit for Hadley.... just in case! I thought, well, this feeling is strong, I should pack something. But I didn't want to go crazy and pack everything that we would pack if we knew we were staying over the night because Andy would have probably thought I was nuts! At least I had Hadley's necessities if this feeling was right. Then later at her apt when they wanted us to stay over night, I was shocked! That feeling was GOD! I should have listened!!!! :) At least I did a little bit and packed some things! But WOW, God was even speaking to me through feelings! I know you might all think I'm crazy, but I'm not! I know this was all God! I felt him and I've been praying for his guidance! And he has been answering! ugh, I have tingles just thinking about how much this situation has drawn me closer to God by depending on him and trusting him!

Then at the apt, a social worker told us we could contact our local Shriner to see if they helped at all with expenses if needed. So, last wk, I decided to do that. I talked to a very nice man who was very willing to help! He listened to me as I told him about Hadley's situation! And you know what????? He said, next time you go down there on May 14th, save your gas receipts and send them to us! We will cover them! And then call me when you know when your next apt is and then save those receipts and the hotel receipts if you need to stay over night and send them to us again! I thought i was going to faint! God is completely providing for us! What a blessing! Isn't that amazing!?!?!?!

So, right there are huge examples of how God is working through Hadley's situation! But theres more! Hadley's situation got our ABF and church to pull together to have a prayer time for her. My friend, Elizabeth had it on her heart to get some people together to come over and pray over Hadley. She sent out an e-mail and right away, people were responding. So many people from our church were reaching out to us! We had 6 girls come over to our house to pray with Hadley and I, but on top of that, I got e-mails and phone calls that people were going to set that time away to pray for Hadley even though they could not make it to our house that night. God used her to bring our church together to pray and care for her! It was just awesome to see how much everybody cared for Hadley and wanted to share in praying for her! It shows what an awesome church we have with amazing friends God provided us with!

God has been using Hadley's situation to help me grow as well! I have come so more dependent on God since Hadley has been diagnosed with scoliosis! I have learned that I have to clearly trust him and know he is taking care of her! He is completely in control of this situation and i have FAITH that he can and he will correct her if it is His will! And if it is not His will to correct her spine, I know he has big plans for her! Even though Hadley is going through a lot, I feel at peace because God is in control! I'm usually a crazy worry person paranoid of the worst possibilities, but God gave me peace with Hadley's situation. I am so thankful for how close I've grown in my relationship with God already. I look forward to an even more personal relationship as our trials continue!

I just think how awesome it is that God chose Hadley!!!! He CHOSE her! She is so special! If it meant I had to suffer to know that God has a plan for me, that he knows me, and that He picked me personally, I would. Because through all suffering and every trial, we grow to depend more on him and focus more on the real meaning of life that he gave us! And he chose her for a reason only he knows. His reasonings are already recognizable and I'm excited to see what he has in store for the future. Just think, if she has to continue to go to Shriners till she's 4, 5, 6 or older, she could be an amazing testimony for God. If she is anything like Mianna, she will talk about God and tell people stories that she knows out of the bible! She will pray and be such a great example for the Lord! God could use her in planting the seed of the Gospel in somebody, or he could use her in softening somebody's hardened heart! He could use her through another child she meets going through this trial in which that child can be used to reach his or her parents. He could use her when she is older and wants to reach out to other kids with the problem. He could just be making her a stronger person and developing her personality through this situation to get her ready for something he wants to use her for in the future. The possibilities are endless! And I feel so honored that God wants to use my daughter and is using her already!

These are just a few ways God is using Hadley. There are more and I know there will be a lot more! Isnt it just amazing how God uses the trials we go through for his Glory. It definetely amazes me!!! Thank you God for choosing using my daughter according to your plans!

Hadley's 2nd opinion

Hadley had her 2nd opinion on Wednesday at Shriners Hospital in Chicago. Everybody was so nice there! We got there right on time after a 3 hour drive. We waited in the waiting room for a bit until we were called in. While in there, a couple of clowns walked by and gave Hadley a little raggedy baby. She of course cried out of fear, but they were so sweet. How nice of the hospital to do that for the kids :) Then we got called in and first the nurse came in and asked a couple questions. Then we left to get another updated x-ray for Hadley. Hadley just learned to say HI so she was say HI to everybody. She definitely was miss popular there! After taking x-rays we went back and 5 people came into her room all at once. We had the nurse, the Dr, a social worker, a resident(Dr assistant), and some other guy I didn't know what he was doing. It was weird. But it felt like they were all working together for the best care for Hadley. Very reassuring! So, we saw Hadley's X-rays and her curve was at 45 degrees which was better than before. But the Dr said this was because we just took her brace off and it takes a day or so for the spine to go back to its original shape. So the true test would be tomorrow after having the brace off. The Dr absolutely recommended casting for Hadley and wanted it done the next day! WOW! Talk about getting us in fast. He thought it was crucial to cast her right away because of her large curve. So, we got it all set up and we were ready for casting the next day. We were both a bit nervous, scared, and overwhelmed, but we know this is what is best for her. Like I said, they were all so nice there. After all that, Hadley got a little beanie baby for being so good. The social worker guy got a list of hotels and helped us in any way he could. He was awesome! The nurse talked to us about everything and was so personal with us! All of our questions were answered and we left feeling confident!
That day since it was so early and we couldn't check into our hotel for another couple hours, we decided to drive down town to the Navy Pier since it is free. Well, we thought it was free at least. We got there, parked and started walking. Then we saw a sign saying $19 for parking! Yikes, that's a lot of money for just walking a Pier. Then really small it said, "the first 60 minutes is complementary." So, it already took us 20 min to get situated, we thought there was no way we could do that. We got Hadley some lunch and tried walking a bit. It was so chilly and not very amusing, so we literally ran back to our van and got out of there right in time not having to pay the $19! We tried finding a parking spot down town so we could walk, but we had no luck. By this time we were pretty stressed with all the driving at traffic so we started heading back to the hotel. We spotted a little park near the lake and decided to stop for a bit and walk down to the lake. That's really about it. The view was great, but too much stress with cars! So, we went to a store and got Hadley some special treats for her big day. Then we got back to the hotel and let her play for awhile. Then we got a bite to eat and the restaurant attached to our hotel. Thankfully our hotel supplied us shampoo, tooth brushes, and toothpaste so we really didn't need to buy too much. That night we gave Hadley a very long bath since it would be her last for a very long time! It was so sad to know that and to see her having such a great time in there! We went to bed super early since we were all so exhausted and had a big day the next day.

A video how casting is done

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.

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....

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!

The Magic Bullet

For my birthday, my mom got me the magic bullet. (she gave it to me super early because she was excited.) Anyways, it is amazing! It does everything! Today I made baby food for Hadley, then the girls and I made smoothies. And it makes individual sized everything or you can make it for more than one serving. It was great because we all wanted different flavored smoothies and it was easy to do! Its also a great way to get them to eat healthy. Im going to try and puree vegatables and fruits and hide them in meals because Andy is not a veggie and fruit lover, but this way he can get his nutrition without even knowing it :) The whole set comes with a blender, juicer, grater(for cheeses, etc), general mixer, chopper, and you even get mugs that attach right onto the mixing part so all you have to do is take it off and give it to the person. If you can't tell, im super excited about this! Sounds as if I could be advertising for them, but I swear, Im not getting paid! :) Here are a few pictures of our smoothie making experience...

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 :)

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! :)

Easter Pictures... better late than never