Merry Christmas!


Christmas morning

Gift from our friend Jess! He loves it

Matthew loves Pajamas! He got several new pairs. This one is one of his favorites!

Resting under Aunt Colleen's tree.

Christmas morning

Matthew's Christmas Dinner (cereal)

Matthew with Santa.

Matthew at the Make-A-Wish party. He wrote a beautiful letter to Santa.

Matthew with his friend Colbie.

Matthew having himself drawn as an Elf.

Matthew with Santa at the Starlight Christmas party.

Matthew is still not feeling the best. He has a cold and still running a low grade fever. He spent the day resting at home, watching TV and catching up on his school work.

Friday's appointments went fairly well. He weighed 12.7 Kilos(almost 28 pounds) and was 93.5cm(almost 37 inches). He has been growing very slowly since the TPN trial back in April 09.

His GI doctor who has been following Matthew since he was 18 mos old was again, not very helpful. He is a brilliant man but not helping much with Matthew's current nutritional status. Even with the ileostomy, Matthew can not digest fat or any complex foods. He has to eat simple foods such as dry cereal, soft veggies, soft or dehydrated fruits and small amounts of natural turkey slices etc. His food variety has decreased a lot since last year. We really need to find a supplemental formula that will agree with Matthew's GI system. We stressed this fact to his doctor and also mentioned that his genetics doctor is quite concerned about his nutrition. He did a little research on his computer and said we should try Portagen. It's a formula made for both children and adults who can not break down fats. This was only after he wanted us to try Avocados and Ostrich eggs . He mentions this every time we see him despite the fact that we tell him that Avocados upset Matthew's belly and that we have no idea where we would buy Ostrich eggs!!!!!! Seriously........

We dropped the script for the portagen off at our pharmacy and we are just waiting to see if his insurance will cover it. It needs a prior auth. His doctor also said that this can be bought at any grocery store in the baby formula section. I am not sure about anyone else, but I have never seen or heard of it before. It must be located right next to the ostrich egg section :)

Matthew's orthopedic appointment went well. She said that his AFO's are working well and to keep them the same. His knees still hyper extend and bow in. She also noticed that his hips rotate inward and have too much flexibility. This is something that we just have watch for now.
Also on Friday we had a chance to visit Eithene again. She was awake this time but not feeling well at all. Matthew talked with her some and tried to sing her a song, but she just wasn't feeling up to it. She did tell us a few things like : her favorite princess in Cinderella, she wants to see the new movie"Tangled", and she doesn't like Scooby Doo. We didn't take her picture with Matthew. I don't think she was feeling well enough and I didn't want to upset her. Don't forget to visit her site. www.caringbridge.org/visit/eithenerosehilliard

Matthew also met a new friend Emalie. She is 3 1/2 and a sweetheart like Eithene. Matthew said," Now I have 8 girlfriends."

On our way home yesterday, we stopped at Birchgrove Baking . This is the bakery where Matthew's Birthday cake was made. Matthew took his picture with Jenn. She is the one who made his cake.

Hopefully Matthew will be able to go to school tomorrow. He only has one day of school this week before Thanksgiving break.

Matthew had a chance while in Boston to visit a Build a Bear store. He was given a gift card from a very special person for his Birthday. Matthew picked out the only food related bear. A bear with candy corns. He spent a few minutes just holding the heart and making his wishes. It was so cute. Thank you Melissa.:)

Matthew had a wonderful and busy Birthday weekend. His cake from www.icingsmiles.com was just amazing. Jenn from www.birchgrovebaking.com created a woodland fairy cake for Matthew. He was so happy when he saw it for the first time. He looked at every little detail and told us what he wanted to eat first.
He was nervous when family and a few friends started to arrive at our house, but it didn't last long. He was excited for the rest of the day and enjoyed opening all of his presents and getting to eat a small piece of his "special" cake. The cake never left his belly. Matthew said it must like it there. After several hours we ended up venting over 20 ounces of chocolate liquid out of Matthew's belly. It just wasn't moving anywhere. He enjoyed eating the cake so much that it was worth it. He ended up having a belly ache this afternoon and into the evening. His belly was much more distended tonight but not as big as it would get before his surgery. This is the first time since his surgery that we have noticed that much belly distention. I am assuming it's from the cake yesterday. Again, as long as his belly settles down in the next day or two, it was worth it and I am sure Matthew would agree. He loved his birthday and his birthday cake.:)))

This morning we also attended the MDA bowl-a-thon put on by our local postal workers. Matthew started the event by rolling the first ball. He had a good time watching everyone bowl while he colored in his new coloring books from his friend Linda.

The rest of the day was spent resting at home. He is exhausted...

The MDA lock up event last week was a big success. They had over 70 "Jail birds" who were "arrested" and had to get donations for their bail. Our friend Melissa raised 1300 dollars. Matthew was there to handcuff her and cheer her on.

It ended up being a very cold Halloween. Matthew went to our friend Jacob's costume Birthday party in the afternoon. They are only one week apart in age. He had fun trying to break the pinata.
Since it was so cold out, Matthew didn't go trick or treating. He handed out candy to the neighborhood kids. 23 in all. He counted every one of them.
Matthew's sweet Friend Eithene www.caringbridge.org/visit/eithenerosehilliard dressed as Tinkerbell for Halloween and Matthew was Peter Pan. They are such a cute pair that I couldn't resist putting both of their pictures together. Such sweethearts. :) Eithene really needs some extra prayers. She is still inpatient at CHB and dealing with yet another infection. :((( Matthew's 6th Birthday is less than a week away and it's the first time that he will have a cake that he will be able to try. www.Icingsmiles.com is arranging a special egg free cake to be made for Matthew's birthday. It will be a Tinkerbell/fairy themed cake. I am so happy that an online friend of ours told us about this wonderful organization. Thank you Donna. :)

Matthew has a four day weekend. He is super happy about it. Today I brought him to his friend's birthday party at the movie theater. It was the perfect party for Matthew. He could sit and watch a movie and then have some snacks. He had a great time. I also had him go outside with his brothers to do a photo shoot for their fall pictures. They came out very cute.

This was how Matthew looked after two days of being discharged from Boston after his ileostomy. He was so dehydrated despite drinking a ton.

His poor eyes were sunken like I have never seen before

This was the night we brought him to Fletcher Allen Jospital. He looked very bad. :(

After six days in the hospital again, he was looking much better:)

The Mito Action Walk

Team Mighty Matthew!

Matthew and Ava!

Still not feeling well at the walk.

Monday was Matthew's first day of first grade. A few weeks late, but he made it.

Matthew playing in the closet in his hospital room.

Matthew chilling out watching TV

Matthew the night before his ileostomy.

Just after surgery.
Going for a ride in the garden at CHB

Matthew's lost weight this past week from his surgery. He needs to put the weight back on . He's so thin. It took us so long to get some weight on him. I hope it's not the case this time.

Matthew's sweet friend Eithene. She wasn't feeling well and didn't want to smile. Smile or no smile, she is a beautiful little girl. :)