PRESCHOOL 101

Welcome to preschool Matthew!!!! Of course, the first day didn't go well AT ALL. He squalled as I was leaving and I felt so helpless but yet felt that this is definitely what he needs right now. After he calmed down he explored his room and made some new friends. While at school he's somewhat refusing to feed himself by throwing his plate into the floor and making the teacher sit beside of him. Toddlerhood, gotta love it!!

Ms. Rose, Matthew's teacher explained to his classmates that Matthew can't walk as good as he can and that they need to be careful around him and kind of help him along. They are a blessing, these little ones help Matthew along on the playground and want to hug and kiss him and he loves it. Why can't adults be more like these 2 year olds.Matthew has learned so much from these little ones, Bradley and I can already see a huge difference. His words/babbling is more sounding and you can actually here a few more clear words, he's a little more independent with his walking and with his feeding. He can now feed himself pretty much his whole meal with his spoon,fork and fingers without asking us to do it.

After his shock of preschool, Matthew and Nathan had some down time on the Gator at my parents. They love riding and driving this thing, how cute are these pictures.

Of course this Gator is made for a 3 year old but Matthew thinks he can operate it just like Nathan, except his feet can't reach the pedal. Nathan has to push the gas while Matthew changes the gear and steers while waving and telling everyone "bye".

Also new for Matthew this week was his NEW braces, they're getting shorter!!! Bad part is he's having to pretty much learn to walk confidently again due to his weak calve muscles.

I saved the best for last, Matthew got his first real HAIR CUT this week too. Marsha done a really good job. Thank goodness for such good friends.

Until next time, God Bless!!

2 Year old Pictures are HERE!!!

HOW CUTE!!!!!

US HISTORY

On one of our short days at NIH we decided to take the metro (subway) into DC for a quick history lesson. Bradley has never been to Washington D.C. so what better time to go. The subway was a experience all in itself. I didn't take any pictures of that adventure due to the fact we had to be sure we had enough money on our tickets and got on the right train going in the right direction. All in all it was pretty fun.

We were in DC for about a half a day, it was so HOT. My advice is to never go there in the summer.

We enjoyed our cool visit to the Air and Space Museum and the National History Museum.

On our way home Thursday we stopped by the Natural Bridge in VA. Those of you who don't know, Thomas Jefferson used to own this national wonder, according to the brochure he came here to "think". Imagine that!:)

NIH

The Marshall Family is now back from our trip to the National Institute of Health where we were involved in a study that deals with the kidney, liver,eye functions with individuals who are diagnosed with Joubert Syndrome.

Joubert Syndrome is a rare genetic disorder that affects only 500-600 people worldwide. People living with JS have a risk of developing eye, kidney and liver disease depending on what gene they have. Matthew has officially been diagnosed with this rare syndrome, fortunately he has a mild case where he could possibly live a normal healthy life without none of the major diseases, but for now he's still at risk

We had a wonderful team of doctors at NIH who were very supportive of us and helped us understand this syndrome. We also got to meet two other families who are also affected by this syndrome, Derek,11 and Parker,10. I can't tell you how meaningful it is to meet other parents who are dealing with this same syndrome. We have definitely made new and lasting friends.

Matthew's scans and blood work came back perfectly normal, although he did get somewhat dehydrated from not eating before his blood work. Matthew's eye appt. however did go well but we did get a huge wake up call. Matthew's optic nerve in both of his eyes is somewhat disformed which is a sign of JS and a sign of glaucoma. So, now we're back to going to the eye dr. every year. Matthew's vision is perfectly normal and the NIH eye physicians don't believe that his optic nerve formation will hinder his vision at all, we just have to keep a check on them since he's at risk for glaucoma. However, I genetics dr. suggested to us that sometimes JS kids have this malformation of the eye and as they grow it appears to normalize itself.

Wednesday was another big day for us, we met with Dr. Heller, the GI doctor and he explained to us how the liver, etc works and said that Matthew's blood count and renal functions were better than normal and he suggest that Matthew has his blood work and renal ultrasounds every 2yrs instead of every yr. God is so Good!!! As you can see from the picture above, security is very tight here since 911.

These are some pictures of Matthew in the playroom at the Children's Inn at NIH and some of the pictures of the Inn itself. This is a wonderful, wonderful place.

I wish Matthew had a playroom like this at home, he'd never come out.

The Children's Inn at NIH is a beautiful Inn, they do make you feel at home. Bradley would have a different opinion, he hates hospitals and he liked the inn but he's not much on socializing like Matthew and I are. All in all we did enjoy ourselves. Matthew had his own mail box in PO area where he got mail everyday. Example: one day he got a stuffed cat and a pair of sunglasses, and one day some of the other kids staying at the Inn made him a craft. It's so cute.

As you can see Matthew was ready to go home, a long, long 8 hour drive with a toddler.

Bradley and I can truly say that this trip was worth a million. We saw other kids battling so many things, it has kept us grounded and humbled for sure. We can honestly say that we are PROUD to be call a PARENT along with all of the parents we saw and met at NIH. To us these parents are a true calling from God, these kids have amazing moms and dads that some children in the US and in the world don't ever have.

We are truly blessed with being Matthew's parents, he is definitely an adventure, and adventure worth sharing.

33 and New Adventures with LOTS of Pictures

As you can see, I am officially 33 yrs old now. My brother-n-law also shares a birthday in August, his is the day before mine. So, for our birthday we all decided to go to a Dash Baseball game at the new stadium in Winston. We had a GREAT time as you can see below but it was sooooooo HOT. This was Matthew's first baseball game and we will definitely be going back before the season is done.

We also took our neighbors kids with us, Corey and Lawrence and yes we all 8 fit into the van. This is just another part of our Marshall clan.

Matthew stayed so sweaty the whole ballgame. While we were watching the game, Matthew was sneaking some sips of soda out of our cups.

Boy, is it HOT!!!!!

This is Matthew's new way of cooling off during the game. Isn't he so CUTE!!!

Corey and Lawrence

I can say looking back since I've turned 30 that when a person hits 30 life truly begins. At least it did for me. My mom always told my sister and I that your 30's are your best years. So far mine have been a test of my faith and I can say that I'm somewhat still standing strong, with God's help of course.

Matthew too is starting out on his new adventures, he starts preschool in 2 weeks going 2 days per week.

This week has been another reminder that God has His best in mind for his children and that he goes above and beyond when he answers prayers.

Let me explain. This past Monday we had our annual eye appt. for Matthew at Baptist with Dr. Weaver. If you ever met Dr. Weaver he would remind you of a very strict drill Sergent who is very sure of himself and can scare you to DEATH. He pretty much had to hold Matthew down to examine his eyes (we were there an hour), anyway, I just said a small prayer the whole time during our visit that everything would just be normal with Matthew's sight and no sign of nothing. Finally, at the end of our visit I explained to Dr. Weaver about Matthew's diagnosis from Dandy Walker back to Joubert and about our upcoming trip to NIH. He put his hand on Matthew's knee and told me to get a second opinion, two heads are better than one. He told us that Matthew's eyes are perfectly HEALTHY and NORMAL with no malformations,etc. He also said that he didn't want to see him til he's 4yrs. old. WOW!!!!!, but that's not all.

Our next destination at Baptist was to Brenners', I hate going there, it's so heartbreaking. I requested Matthew's genetic report and it had been 12 weeks and we hadn't heard anything. We waited and waited and I prayed like never before for nothing to show up but if something did that God would help me to accept His will and have hope. The nice lady at the counter finally led me to the phone where Dr. Jewett's assistant was waiting for me on the other line. She explained that there were 8 major genes that help determine Joubert Syndrome and that they found all 8 of Matthew's and that they all showed NORMAL with a negative result for Jouberts. However, this still doesn't mean that he doesn't have it, but maybe only a mild version. We'll get a confirmation yes or no when we go to NIH.

Next, I've been trying to find a preschool that would allow part-time attendance instead of full time. All I needed was 2 days. My last preschool on my list to call did accept part-time and they had exactly 2 days available for Matthew's age group. He starts in two weeks.

For those of you, including myself ever doubt that God doesn't answer prayer or isn't always there. HE IS!!! God answered my prayer beyond my imagination.

God is GOOD!!!!

P.S. Please keep us and Matthew in your prayers as we approach our trip to NIH.