Pre-Admission Testing

After 5 hours at DuPont hospital we finally were able to go home. LaRae's first doctors appt. Was with GI, however, her GI doctor was home sick so we saw someone else that didn't have time to review the cart and it really was a waste of time. I have no answer to any of my questions.


Then we went to pre-admissions testing and of course there was a really sick kid that didn't have a mask on. I tried to get LaRae to wear one that wasn't happening, so I ask for LaRae to be moved into a room away from them. I think we are safe so far.

They went over everything. I did find out it looks like they might be removing a disc in her back also. If I understand correctly they have to remove the disc to get to the spinal cord. The are calling it an exploratory surgery with possible disc removal and tethered cord release. She will be in the PCAU for several hours. Then moved to the PICU for at least 24 hours under heavy sedation good chance she will be on a ventilator the whole time. She has to remain still for 24 hours. She will not wake up after surgery until the next morning. Both Quintin and I will be with her most of the time. I will stay with her overnight. He will stay at the Ronald McDonald House or with friends from Church parents house.

They did have to do blood work. They crossed and typed her blood to make sure they have blood on hand if they did it. She wasn't happy about that.

They did call us with a surgery time she needs to be at the hospital at 9:45 am Monday morning.

Please Keep LaRae in your prayers. We sure need them.

Complication after her MRI

They decide for safety reasons they needed to intubate LaRae for the MRI. There was a risk she could aspirate. She had a cough before they did this and the chest tube aggravated the airway. When she came home she got really sick that night. She started to run a fever of 102.8, croop cough. congestion, and chest wheezing. I took her to the doctors the next day. We had to put her threw a chest X-ray to make sure nothing was in her chest because she was coughing up stuff. They checked her for strep that was negative. She had croop and bronchitis. I had to do neb treatments and give her steroids. Her doctor didn't what to put her antibiotics just yet because of her just getting over having c-diff. On Friday if she wasn't any better they would call in a scrip. Guess what....they had too. She wasn't any better. A week with no sleep. She's getting better still fussy.

I'm not sure if she didn't have a low IGA that she would of got this sick from being in the hospital for such a short time. This happens every time she steps into the hospitals with in 24 hours she is sick. I can only can come to one conclusion that her low IGA does affect her immune systems and why she gets so sick when she goes into a place that is full of germs.

They decide for safety reasons they needed to intubate LaRae for the MRI. There was a risk she could aspirate. She had a cough before they did this and the chest tube aggravated the airway. When she came home she got really sick that night. She started to run a fever of 102.8, croop cough. congestion, and chest wheezing. I took her to the doctors the next day. We had to put her threw a chest X-ray to make sure nothing was in her chest because she was coughing up stuff. They checked her for strep that was negative. She had croop and bronchitis. I had to do neb treatments and give her steroids. Her doctor didn't what to put her antibiotics just yet because of her just getting over having c-diff. On Friday if she wasn't any better they would call in a scrip. Guess what....they had too. She wasn't any better. A week with no sleep. She's getting better still fussy.

I'm not sure if she didn't have a low IGA that she would of got this sick from being in the hospital for such a short time. This happens every time she steps into the hospitals with in 24 hours she is sick. I can only can come to one conclusion that her low IGA does affect her immune systems and why she gets so sick when she goes into a place that is full of germs.

LaRae's MRI results

As you know LaRae had her MRI on Nov 30th. We saw Dr. Campbell her nurosuergeon right after the MRI. We always see the PA first. He asked if we had any concerns or if there were any changes in LaRae. So I processed to tell him that LaRae is losing use of her left leg and foot. She can't bare weight on it to go to up steps, she drags the toe when she walks and it seems like she does know where to place it either almost like it's in outspace if that makes sense. I told him this has been going on for about 8 weeks now and the symptons are increasing getting worse over time. Just yesterday I had to help her go up the step to get into the house she could even bare enough weight on the left leg to get up at all.

Dr. Campbell came back in, which seem like an eternity, told me that the syrnix was worse. He had hoped it this was not the case. Said that since she is having symptons they will have to address it there is a but coming. The only problem is it's not going to be an easy fix. They can't drain the fluid because there is still not enough, however, they can't leave it untreated because it could cause nerve damage as the fluid collects. He also said that if the syrnix is getting larger it from another underlining problem. Here's the catch where her syrnix is it's from what is called a tethered cord. They ruled this out last Nov with the first MRI because they could see it. Nov that the fluid is collecting it's what they call a grey area where the cord might be tethered and it doesn't show on the MRI and they can only go by symptons.

It get complaicated for doctors what to do. So we had to out weigh the risk and our only option was to schedule Larae for Surgery to untethered the cord, hope that is the problem and that the fluid reabsobs into body. It was a very hard decsion for us to make. It was the saves out of all the options we had.

Her surgery is schedule for Jan 3, 2011 at DuPont Hospital for Children. She will be in the PCAU after surgery for a few hours, then in the PICU for 24 hours and then in a her own room hopefully for at least 3 days. We hope everything goes well. She has a low IGA which is part of her ummun system so ever time she goes in the hospital she comes out sick. So I worry about her being in over long period of time.

I am very nervous about this up coming surgrery. I am getting her a blessing. I have realized that I need to give this to my Heavenly Father and let him help me threw this. I need to be strong for her and my family. I haven't been able to do that at this point untill yesterday I had to underful sister from my church visit me. They brought us dinner and just coming and seeing me. They took time out their busy schedules to see what I needed I really thought at the sight of them I would lose it and break down and cry. I held it together. It let me know that that I can do this and it might feel like I am going threw this all alone and know close to me understands, however, I have lots of people that love me and are saying lots of prayer for my little girl and my family and that means so much. I could do this without them.  Before they came I picked up my scriptures and searched for strength, comfort, hope, faith, miracles, endure and healthing of the sick. I found a scripture that touch me that I would like to share.

Psalms 18:2 The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in Whom I trust; my buckler, and the horn of my salvation, and my high tower.

This scripture gave me peace like I haven't had in almost a week. He is what comforts me in my time of need. My faith is what gets me threw. I have seen him works miracles. I finally found peace with LaRae's new medical condition. My Heavenly Father is the only one that could of help me with this. I was so devasated from the news no one could help me. It feels good to be at peace with it. God Bless everyone for your prayers.

Please keeps LaRae in your prayer we have along road ahead of us. Keeping her health until Jan 3. will be hard. I am thinking about doing a public caring pages for her called amazing LaRae

LaRae's MRI

LaRae is in now having her MRI done. I am waiting for it to be over. I am very nervous. They decided this time to put a tube in her throat to protect her airway. The risk of her aspirating is still too high. So recovery will be longer and she will go up in the surgical suite. I really hope this gives us the answers we are looking for. We will see Dr. Campbell right after the MRI at 1:00 pm. We won't have to wait long for some news. At least I didn't cry this time when they carried her away.

I am grateful to have wonderful friends and family, that are so willing to help me out with my three other kids. So, that I can be here and not worry about what is going on at home, and for that I am grateful.

My faith and love in my Savior is what helps me get threw days like today.

Sorry for no news!!!

Things have be crazy in the Lawley house. One medical problem after another good news and bad for both LaRae and mom. Sorry to keep everyone in the dark, however when mom is sick nothing gets done and the blog is the last thing that is on the list. All the computer crashed too so we had to buy a new one. I happy to anounce that I am starting a family blog so at this point forward this blog will only be about LaRae's medical journey and anything to do with medical stuff I guess you could say. I will link both blogs at the top of each blog so it's easy to move between the two of them. The one other thing that will make life easier is I have new softwear to help with blogging so I don't have to type so much. So thanks so much for following LaRae's journey. Hope to post more soon.

She does have a MRI of her spine coming up on Nov. 30 that we are very wottied about. She is having problems with her left side of her spine from the middle of her back to her foot. They are worried that the syrnic his getting bigger. I am like always staying postive. When I look at her she gives no reason not to. She has such a spark in her eye. Until I know more......   

Swallow test results unofficially

LaRae unofficially passed her swallow study. It was comical watching the tech and doctor trying to get LaRae to eat barium cover food willing. She was not having any part of it. The test didn’t go as well as it could of. They needed her to cough on food while doing the test and that didn’t happen. They did find out that her air was being protect when she eats. That was main thing they need to know. After the test was over and they gave her cup back, she did have one of her coughing episodes. Their conclusion was that she drinks too quickly and it pools in the back of her throat it's because she can’t swallow fast enough to catch up with what her mouth is taken in. That causes her to cough. In a nutshell, she is delay in her eating habits like everything else and with time, she will catch up. LaRae just has poor table etiquette.

Now I need to get the official report from the GI doctor. LaRae should be clear for surgery I hope with in the week. We have to get the C-diff test out of the way hopefully this week and we should be good to go.

1K walk with Luca "Lazylegz" Patuelli

Please take the 5 minutes to watch this inspirational video. Luca Patuelli has Arthrogryposis in his lower limbs. He did a 1K walk with no crutches or braces at the AMC Convention in Disney this year. It was amazing to watch. I'm proud to be able to share this with everyone who checks my blog. I hope my daughter has this much determination as the years goes on. I am so lucky to say that I have had the chance to met this amazing guy. He has a big heart and more will power then I have ever witness in anyone ever before. If he can do that then we have no excuses at all.

No Excuses, No Limits!

AMC Convention Opening Slideshow from Ani Mahan on Vimeo.

Adrian met his dad's family the Allen's for the first time in 11 years.

Adrian reconnected with his biological dad’s side of the family the Allen. He hasn’t seen them since he was 3 years-old. His father has past away since then. Adrian was excited to meet them and scared all at the same time. What Adrian didn’t realize is that the Allen clan is big. He met maybe half and I’m not sure if that’s even right. Adrian and I went to Philly for his Aunt Surprise 50^th birthday party on July 11. Adrian met his dad’s sister Bev, her husband, his dad’s brother Brian, Cousin Reggie, his two kids, and his sister Alex. In addition, a whole lot of Aunts, Uncles and cousins that I can’t even remember who they all where in this tiny house and yard. I didn’t know you could fit some many people in such a small yard but they did have lots of fun.

I wasn’t sure at first how this was going to affected him when they first found us on face book. We talk about this as a family and Adrian said he want to know them and wanted them to be apart of his life now. We felt that he was old enough to be able to handle it. We are trying to take it slow; however, Adrian doesn’t take anything slow he does everything a mile a minute. He wants to do all kinds of things with them. I have to slow him down all the time. I would love to have half his energy. I did take some great picture at the party. My baby is growing up. We had a great time at the party. Adrian was very happy to meet everyone.

Adrian - slideshows

LaRae's Biopies are in

LaRae’s test results are in. Dr. Ramirez called today to tell us the results of the biopsies. She had good news and had some bad news I guess you could say. The small bowl had no inflammation so no food allergies were present. That was great news. We did not have such good luck with the large bowl. There is inflammation and small ulcerations maybe or bubbles in the larger bowl and rectum. It is hard to explain what you see on the pictures. The biopsies showed that she has inflammation and an infection. She has colitis and it could be ulcerative colitis their not sure at this time. They have to send a stool sample out to see what kind of infection she has after they collect the sample we will start her on flagyl a very strong antibiotic. They might have to change the antibiotic depending on what the test results are. She has to go for a swallow study now too.

Dr. Ramierz will not clear her for her elbow surgery in October at Shriner’s until all these test are completed. I really hope this does not interfere with LaRae being able to have her surgeries. I keep thinking, not another set back it seems like that is all that ever happens just one after another. I still have not had time to reschedule her MRI yet. I keep wondering when it will ever end. I am trying to staying positive. I keep telling myself that there is a light at the end of the tunnel and I will get there someday. Just that today is not that day yet; however, everyday I am a little closer.

Hailey Halo

We were nominee for a Hailey Halo back in January or February. When I answered the phone and it was Sean Vassilaros that was calling on a Sunday afternoon. I was a little confused to why he would be calling me from California. Then he gave us the good news that the Kutztown Ward nominated us for a Hailey Halo and a check would be coming to us by the end of the week. I believe there was a brief moment of silent because I was in total shock. I was unable to form an intelligent sentence I was speechless. I cannot even remember what I said other that thanks and appreciated what they have done for us. It could not have come at a better time things were bad. We had just found out LaRae had spinal fluid on her spine call a Syrinx. LaRae has a long list of other medical problems to go with this. We just were done with 12 weeks of serial casting and driving back and forth from Dupont in Delaware was taking a financial toll. We were having a hard time paying the mortgage. When Sean call came I knew Heavenly Father was listening he answered my prayers that somehow we would make it threw to the next month. After Sean and I talk for a while, I hung up the phone and I told Quintin. He could not believe it either. I went and prayed I thank Heavenly father for answering my prayer and always being there for me when I need him and then of chores the tears finally came not sure how long I cried for. I still cannot believe that someone/someones loved us enough to think that we deserved to be nominated for a Hailey Halo. I will always be truly grateful to them and the Vassilaros for giving us one. I am having a hard express in words how I truly feel about. God Bless them.

This is our story.

Our Miracle baby was born on 11/11/08. She was a surprise for us since I (Sharon) had been sick for 2 years at this time. Doctors had said that I was never going to get better and was not even sure how long I was going to live. After a routine surgery, my stomach shut down and I was no longer able to eat, I had IV and feeding tubes keeping me alive. We were shock when we realized I was pregnant. Doctors had told us this could never happen. I guess doctors get it wrong sometimes. Being pregnant saved my life the hormones started my stomach again and I was able to eat and get all tubes out. That is why we call her our Miracles baby.

We never expected what happen the day she was born. She was born with a rare condition called Arthrogryposis Multiplex Congentia with Amyoplasia. It was five long weeks before we got the diagnoses. LaRae had contractures from her shoulder to her fingers in both limps and has no biceps. It has been a hard year between doctors appt at three different hospitals. She has been threw so much at a young age. There is no great fix for this condition. She has gone threw splinting and serial casting to get her elbows to bend. We have had some progress, however, not a lot. In the next few years, they will surgically to bend her elbow, called tendon release and capsule release. Even with the surgery, she still won’t be able to move them on her own. She might be able to have a bicep transfer. If that was not enough she has been diagnose with a sryinx. She has too much spinal fluid on the spinal cord. There isn’t a great way of fixing that either. Doctors will have to watch to if she will need surgery to drain the fluid. She has GI problems too she isn’t gaining weight and their biggest fear is that she is choking on solid and liquid foods so she might aspirating something into her lungs. LaRae is doing great for what is wrong with her. She has more spunk and determinations then I have ever seen it such a small child.

Threw this all we have had many finical problems too. Quintin work has not been doing well so money is very tight and it cost a lot to travel to these doctors money we just do not have to spare. My faith in Heavenly Father has been the only way I have had it threw this hard time. He works miracles when you least expect it. I have learned a lot threw my daughter. She has been a blessing and a miracle.

Pictures of LaRae

This is their story

I would like to tell you about their story and why they give out Hailey Halo’s. Sean and Wendy Vassilaros had a beautifull baby girl born in August of 2006. You hope your baby is going to be born healthy and for the Vassilaros’s that was far from the case. Hailey was born premature. Her esophagus was not attached to her stomach, she had a feeding tube, lots of surgeries, and spent most of her infancy in the hospital.

The amazing thing about this little girl was she never gave up she always was smiling and it was always a “Beaut’ ful Day.” She fought so many battles and won them. She was determine not give up, I am not sure she knew what that was. You would never had known she was even sick. She had this shine about her that lite up the room. This family has amazing strength they have been threw so much and are now giving back. On August 11, 2009 Hailey past away suddenly she was doing fine. We all thought she had made it threw the worse part of it and now she was home free. Never in a million years did I ever expect to get the phone call I got that Hailey had died in her sleep. I can tell where I was and the time. I can tell every detail of that day. It was liked the world had stopped in time when I got that phone call.

I remember a scripture Wendy sent to me after my daughter LaRae was born that gave me so comforted when I was struggling with the diagnosis. LaRae was diagnosis with Arthrogryposis Multiplex Congentia and Amyoplasia Congentia.

Alma 11:43 The spirit and the body shall be reunited again in it’s perfect form; both limb and joint shall be retorted to it’s proper frame, even as we now are at this time; and we shall be brought to stand before God, knowing even as we know now, and have a bright recollection of all our guilt.

Sean, Wendy and the girls thank for your love and such a wonderful gift.

Pictures of Hailey

Here are some links to the family sites please take a look.

www.haileyshalo.blogspot.com

www.amazinghailey.com

LaRae's at DuPont

LaRae had her biopsies at DuPont yesterday. It was a very interesting time to say the least. We started our day to find the van window smashed at Ronald McDonald House. I decided to stay over night instead of driving down at 4 in the morning that will teach me. The only thing that really stinks about the whole thing is that who every broke into the car stole the boy head held game systems but, they left $30.00 in cash.

LaRae’s test went well. We should have the results in 7 to 10 days. She did have some kind of minor reaction to the anestesia when we got home the doctor said it was nothing to worry about. They said this some times happens she got red in the face, arms and hot to touch.

We had one more disaster Adrian had an accident with the last pair of glasses we had for him. We were hoping they would hold up until August so the insurance would pay for two more again for the next school. It doesn’t look like that is going to happen. It has been one expensive day.

The only thing that really matter is that LaRae came threw her tests with flying colors. Everything else can be fixed or replaced over time. Life goes on and it is all good. I’ve made it threw another chapter in my life and I am still smiling. God is good.

LaRae had a set back

LaRae's MRI was canceled. The nursed called on Friday to go over the night before instructions. Due to LaRae's swallowing problems and that she is now choking more frequently when she eats. The anesthesiologist said she is too high risk to put her under without him in the room. They had to reschedule it for July so the anesthesiologist could be schedule too. They are afraid that she could aspirate into her lungs.

They also said I need to call GI back because of the choking on foods and liquids she could be aspirating small amounts of food and liquids into the lungs. That is why she coughs so much when she eats. We have lots of appts at Dupont this summer with GI. I hope we have answers soon.

Update on LaRae

LaRae saw Dr. Campbell at Albert I duPont Hospital at the end of March. He is her neuro surgeon. It was LaRae’s second opinion appointment for the Syrinx. I was very pleased at how well the doctor explained everything and he did not rush the appointment. There are a few reasons why she could have this problem; however, they are what they call a ‘gray area’. They cannot see it on the MRI. One reason could be a Tethered Cord; another could be a zero Chiari Malformation. He really doesn’t feel she has either one of these problems. Which comes back to our original thoughts and he kind of confirmed that, but in better medical terms, which I am not going to be able to fully explain right. I will do my best, but please do not hold against me if it is confusing.

At the time that the anterior horn cell was developing, when I was pregnant with LaRae, (they refer to it as a ‘short circuit’ happened) the brain short circuited and funky things happened and went wrong. She was born with Arthrogryposis with Amyoplasis now to find out a Syrinx probably was one of those funky things that happened at the same time too. He said it was like a domino effect, probably more things are affected, and we just did not know about them. He did say that a Syrinx was not caused by the Arthrogryposis; he feels that the Syrinx happened during the same time of development. We at least got some answers this time that made sense.

This is what our treatment plan is for LaRae: On June 1^st she goes for her second MRI and as long as the fluid hasn’t increased, she won’t need another MRI for 1 to 2 years. I am not sure what plan of action will be taken if the fluid is worse, so for now I am going to stay positive, pray a lot, and do what I am learning to do the best - leave it the Lord’s hands.

LaRae trying to fight RSV and Bronchitis. Like Arthrogryposis wasn't enough to deal with.

LaRae sure seems to catch everything. We had to cancel our Nuero surgeon appt on Wed. She was just too sick and they didn't what her coming to the hospital that sick. They were afraid she would get something even worse. We had to reschedule that appt for Feb 23 almost a month away. She has a GI appt on Wednesday the 3rd hopefully she will be feeling better.

She came down with RSV and Bronchitis. It seems that the worse might behind us now. They were really thinking about admitting her. I'm so glad she improve enough that did not happen. Her ped had to put her on strong antibiotic, steroids, and neb treatments every 4 hours. Threw all of this she still smiled and blew kisses. That is her favorite thing to do right now.

She also has gained 2 pounds since December. I was happy that she is was finally growing. She's still not on the growth cart yet , however, 2 lbs is better then none. I do worry a lot about her. She has so many health problems that sometime becomes so overwhelming at times. I am thankful for my supporting husband and friends. I wouldn't make it threw this without there love.

Just another look into my life with a daughter with Arthrogryposis. Staying positive and having a strong testament in Jesus Christ is the only way to deal with all the trails our family goes threw on a daily basis.