HAPPY 1st BIRTHDAY LaRae!!!!!!

LaRae is 1 year-old today.

11/11/08

We love you so very much Scooter.

Love,

Daddy, Mommy, Adrian, Q and McKayla

Week 6 of Serial Casting

Week 6 of LaRae's serial casting. This week did not go as plan. LaRae's skin isn't holding up as well as we would have liked. Therefore, LaRae's right arm needs a weeks break. Marnie fitted her for a new splint so we do not lose any progress we have made over the last 5 weeks. Dr Jay thinks that they will be able to get LaRae's elbow to 90-degrees. They will have to extend the length they serial cast LaRae's elbows. I guess my hope that we would done before Christmas isn't going to happen. That's OK......

It's now Tuesday LaRae's arm is having more problems then when they first took off the cast. It has red blotchy spots and it's swelling. I did not count on a set back. LaRae can't wear her splints for long periods now. I am hoping I will be able to put the splint back on tomorrow for most of the day and they won't cause any problems. I just pray that she doesn't lose the degree of bend that she has work so hard to achieve. She as endure so much threw this processes. The final objective is worth what she has to go threw it is just hard as her mother watching her endure so much as such a young age. She is making me a stronger person. This is a very humbling experience for me. She is such a determine girl and she is a fighter. Heavenly Father gave her such an incredible spirit.

Week 5 of Serial Casting

Week 5 of LaRae's serial casting. We made it yet threw another week. LaRae has one more week to go before they will start casting the left arm. They were able to get the elbow into a 65-degree bend. Which is more then I ever thought was possible for the right elbow. We still have a long way to get the goal of 90-degrees. I really did not think we will achieve that goal only in a week to go. However, I am ecstatic that LaRae's right elbow has come as far as it has. If I was skepitcal in the beginning if this would, work I am a believer now. This was the only way LaRae's elbow was ever going to bend without surgery. She will still need the tendon releases in the future this will make those surgeries outcome better. My prayers are being answer everyday thay she has an improvement regardless of how big or small. I have been blessed to be her mother.

LaRae's 1st Halloween

HAPPY HALLOWEEN

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).