4th Week of Serial Casting

Week 4 for LaRae's serial casting. We made it threw another week. LaRae has another 8 weeks to go. She did really well this week. She was still not happy with Amy any Marnie. However, she was a trooper. Her tears only latested a few minutes after they were finished this week. I can handle that. Her eblow is progressing rather well. we are at a 60-degree bend it's not a clean bend . However, it is still 25 for then when we started. They had to bi-valve her cast again. that's when they have to put cuts in the cast to keep it from becoming to tight (that is the techincal term for it.) Well, that about it for now.... Wish us luck with the weeks to come..... Until next time......

The cuts are the bi-value.

They are cuting the old cast off.

This is LaRae's bend.

LaRae doesn't mind this part.

She likes to watch.

They are bending the elbow.

She not happy the are really bending and holding

it untill the cast is dry.

Now they are adding the color.

Almost done!!!

They are Bi-value the cast.

LaRae hates this part.

The end!

Week 3 of serial casting.

LaRae and I headed down to duPont Monday October 19, 2009. They recasted her elbow. We are at a 50 degree bend. It's not a pretty bend. However, we are making progress. I also have a happier little girl today. She's not complaining about the cast too much, nothing like last week. She wasn't happy about another one going on. They changed the cast a little bit. We only have one layer of fiberglass wrap around it instead of two. They also cut the cast so their would be no pressure that would cause pain. They also had to wrap it with colored tape to hold it together. It seems to be working it's even lighter so LaRae can lift it a little too. So this week was much better.

Week 2 of LaRae's Serial Casting at duPont

Week 2 of LaRae’s serial casting. We headed to DuPont on Monday October 12, 2009. The kids had off from school. I took Adrian with me - he was a big help. Quintin was home also so he had Q and McKayla with him.

They started by sawing off the old cast which LaRae did not like at all. It was loud and the vibration of the saw wasn’t great at all!!!! So that’s were our nightmare begun… Then they started to recast eminently. She never stopped screaming. I had to stop taking pictures because she was getting too hysterical. I did not take pictures of everything this time. We waited at the hospital for 2 hours hoping that she would stop crying; she didn’t but they still sent us home with the hope she would get better by Wed.

On Tuesday morning, I had to take her to the Pediatrician. I found out that the cast was too tight. I had to drive LaRae back down to DuPont so they could cut the cast to relieve the pressure. That seemed to do the trick. She is still a little crabby - I think that’s from the lack of sleep at this point. We now have 2 weeks behind us. Until next week….. Wish us luck…

Monday when they recasted LaRae's arm. I stopped taking pictures. I couldn't handle her crying and not being able to comfort her.

This was on Moday when the cast was still too tight.

Adrian trying to get LaRae to stop crying.

The cut in the cast to relieve the pressure.

This is the LaRae we all know and love.

LaRae 1st day of serial casting at duPont.

LaRae had her 1st serial casting on October 5, 2009. They were originally going to do the left elbow first. However, after talking to Dr. Jay he decided to serial cast the right elbow instead. LaRae has been using the left arm a lot more over the last few weeks and that was the reason for the change in elbows.

The casting went well. LaRae tolerated it pretty well for the most part. We had more problems keeping LaRae from helping. They set her elbow at a 45-degree angle. She was not happy when the bent the elbow that far. She does have problems with sleeping at night. We have 11 more appts. to go. It will be a long sleepless 12 weeks for mom. However, if Dr. Jay gets the results he is looking for with LaRae’s elbows it will all be worth it. There is a chance we could due round two of serial casting in the future before her tendon releases. That will all depend on how well it works this time.

Every night the kids say a prayer before going to bed for LaRae’s arms.

The day before

After we were done and at home.

Thanks for being so patient while I update my blog. It's finally done.

Thanks for following our story.

Giddy up Horsie

LaRae loves climbing on Adrian's back.

Adrian and Marnie dressing up LaRae

August 22, 2009. Yet another appt to have LaRae's splints refitted. Marnie decided to make static splints too. They fit the whole arm with a little movement in them so we can try to increase the bend before we start the serial casting on October 5, 2009. I did not take pictures this time of them because Marnie and Adrian were having so much fun dressing LaRae up. That I took pictures of that instead.

Finally we saw Dr. Kozin at Shriner's

It's August 12, 2009 we are heading to Shriner's to see Dr. Kozin. We saw him at the AMC convention. I really think we will get a surgery date for LaRae's elbows releases. It probably will not be for another 6 months. However, that’s fine with me. I really hate this drive. So we saw Dr. Kozin it was not what I expected. I was disappointed he would not schedule the surgery. He wants her walking first. I did not understand his decision first and disappointed at it. He wants to see her back in four months and hopefully she will be walking by then and then we can discuss surgery options.

While I was in the appt my phone rang. For some reason I forgot to turn off the ringer. It was at that time he was telling me he was not going to schedule her surgery. I was so frustrated with that decision. I thought finally we will get the date and LaRae will finally be able to bend her elbows. Then my phone rang. We finished up the appt and I called the person back. I’m not going to go in to details about the phone call. However, it was devastating news for a family we know and love. It was then it hit me LaRae does not even care if her elbows bend she does not even know that they should. It’s I rushing the surgery because I think she has to have elbows that bend but does she really need them to bend right now can’t it wait until she is older? Dr Kozin comment about LaRae was I could leave her with him and pick her up in 4 months at her next appt. I keep her on a short lease when they start walking around with her and showing her off. We decline his offer.

So for now we have known idea when LaRae will have any surgeries. She is starting serial casting on October 5, 2009. In December we see Dr. Kozin again. She is not even close to walking at this time. She just started to sit up unsupported. So we have a long way to go.

LaRae stole another doctor's heart.

LaRae was born with two holes in her heart. I am glad I only knew about the one. She had a Cardiologist appt at DuPont on August 6, 2009 with Dr. Goudie. That’s when he informed us that she had two holes in her heart. You can image my surprise to that news. I was already worried about this appt with only knowing about the one hole I cannot image what it would have been like if I would have known about the other. So I am glad I did not know. We were there a lot longer then I have anticipated. The one I knew about was a PDA, which is Patent Ductus Arteriosus. We did not know LaRae also had a PFO Patent Foramen Ovale/ASD Atrial Septal Defect. Which is what everyone referees to as a heart murmur? The doctor was concern since my dad past away from a blood clot. So he was making double sure that ASD/PFO had closed up. As he was checking LaRae, I was praying that the murmur they were still hearing up until a week before that appt was gone. She passed all three tests with flying colors. So she will not need surgery on her heart. He was glad to release her from his care but also sad. She stole the heart of another doctor.

What is it?

The ductus arteriosus is a leftover fetal artery connecting the main body artery (aorta) and the main lung artery (pulmonary artery). If this artery stays open (patent) after birth, it’s called a patent ductus arteriosus (PDA).

What causes it?

The ductus arteriosus is a normal fetal artery connecting the main body artery (aorta) and the main lung artery (pulmonary artery). The ductus allows blood to detour away from the lungs before birth.

Every baby is born with a ductus arteriosus. After birth, the opening is no longer needed and it usually narrows and closes within the first few days of life.
Sometimes the ductus doesn’t close after birth. Failure of the ductus to close is common in premature infants but rare in full-term babies, and the cause is usually not known. Some patients can have other heart defects along with the PDA.

What is it?

An ASD is an opening or hole (defect) in the wall (septum) between the heart’s two upper chambers (atria).

What causes it?

Every child is born with an opening between the upper heart chambers. It’s a normal fetal opening that allows blood to detour away from the lungs before birth. After birth, the opening is no longer needed and usually closes or becomes very small within several weeks or months.
Sometimes the opening is larger than normal and doesn’t close after birth. In most children the cause isn’t known. Some children can have other heart defects along with ASD.
How does it affect the heart?
Normally, the left side of the heart only pumps blood to the body, and the right side of the heart only pumps blood to the lungs. In a child with ASD, blood can travel across the hole from the left upper heart chamber (left atrium) to the right upper chamber (right atrium) and out into the lung arteries.

If the ASD is large, the extra blood being pumped into the lung arteries makes the heart and lungs work harder and the lung arteries can become gradually damaged.
If the hole is small, it may not cause symptoms or problems. Many healthy adults still have a small leftover opening in the wall between the atria, sometimes called a Patent Foramen Ovale (PFO).

Philadelphia AMC Convention

We were able to go to a convention for Arthrogryposis with the kids July 17 & 18. They have one very year. It was great seeing that we are not alone. There are so many kids with this but every kid is affected differently no two are alike. We had a chance to talk to LaRae’s surgeon Dr. Kozin from Shriner’s.We were able to locate a great therapist in the area too. So between Early Intervention and outside therapy we will be doing therapy with LaRae 4 times a week. LaRae’s P/T Marnie from DuPont was there at convention she said that we are going to have to serial cast LaRae’s arms now too. That was something I did not think we were going to do. We are going to do that now that the kids are in school. I will be making weekly visits to DuPont to have LaRae’s cast removed and put back on for about 6 weeks.

Convention was great and was very informational. We meet many great friends. Learn a lot about what is wrong with LaRae. We really were blessed she could have been so much worse. I have some pictures of her panting. This is so not like me to let my kids get dirty. For the people who really know me this was hard for me to do. LaRae is teaching me things that I did not think I could do before.

They were able to go onto a Philadelphia Fire Truck. The boys thought that was the best part besides the indoor pool.

Saturday we also celebrated McKayla’s 8th Birthday. We are still trying to plan a sleep over party for her friends. School has already start and we still haven't had one yet.

I'm trying to update myblog as often as I can. So some of this is from the middle of July so please be patient with me. Things have been crazy here with the kids being home for the summer. They are back in school and I can breath again. Thanks!

"RRRibbit"

Another doctors visit at duPont. We were there for a GI appt and refitting for splints again. I feel like I live there. This time we stayed over night at the Ronald McDonald house which was very nice. We still don't have any definite answers about LaRae's GI problems. They are running more test. So we will be going back to duPont in a few weeks for some more test and refitting of the splints. We will also decide then about when to start serial casting her arms.