Coordinate Care Clinic and Boo-boos

Sam had his follow up with the coordinated care clinic at MassGeneral yesterday. It was a good appointment. He is 42inches and 40lbs! He is finally growing well. As nervous as I was about the surgery in January, God really guided the decision and Sam is now thriving. We discussed school concerns and possible port placement. Also the relative long term implications of his medical care. We have a couple follow up next month and hopefully we will then have a pretty good idea of what we are looking at for at least the next year or two.
After that we went to visit my inlaws who are camping. The kids got to swim and play with their cousins. They made ooey gooey s'mores and had a blast. Then poor Sam touched a propane lantern and got second degree burns on his hand. He didn't cry at all, and I didn't realize how bad it was (it was dark) and so I just got a cool pack out of the cooler and put that on it. He didn't cry at all the poor little guy. Please say some prayers for him, that they will heal quickly and there will be no complications.

Off to the doctors

We are off to see Sam's surgeon today. This is just a follow up to the surgeon, but I find myself a little anxious as I feel like his hearing has been affected by the surgery and therefore will be asking for a hearing test today. Praying that they can do one.
Tonight the kids are going with their grandparents for a little while and Matt and I are going out! I am so excited as it feels like we NEVER do anything together anymore. It is so hard to continue to strengthen our relationship when we are so pulled in so many different directions and don't often get to be just the two of us. I am definitely looking forward to tonight. And it is exciting because it is a surprise and I love surprises:-)

It's back:-(

Sam has not complained of belly pain in four days but unfortunately yesterday he started complaining his belly was hurting again.:=( The first time he complained was not when he was eating, and then he complained a couple more times before supper and then a little while we were eating. Ugghhh so frustrating! I am hoping it was a fluke thing, this morning he is gaggy so I am not sure what is going on. He doesn't want to eat anything either but he did eat well last night.
They got to play outside a little yesterday with daddy which is always nice. They LOVE it, and hten I get to make supper without whiny kids, which I LOVE:-) My in-laws have agreed to watch the kiddos for us each tuesday for the next several weeks so Matt and I can go to a small group bible study. Last night was our first night and I was really happy we got to go. I am hoping and praying that we both can grow in our relationship with God and each other through this time. A special thank you to my Grandma and Grandpa for taking care of the rugrats for us.
Please pray for my sister Denise today. She is 34 wks pregnant with a little girl. Her pregnancy has been rather complicated and then yesterday they did an ultrasound that showed that the baby's heart wall is too thick, and that her kidneys and liver are enlarged. We don't know what any of this means yet, but we are just praying for God to heal this little one.

Christmas

Christmas morning was spent here at our house. Matt, the kids and I had a nice morning together as a family. They each got something that they each were really excited about: Sam got a remote control tank (I think Daddy was excited about this too:-)) and the other thing he was really interested in was the Operation Game (he had played it the last time he was in the hospital) and Sophia got a lot of dress up clothes and a "Bitty Baby" which is a sweet baby doll made by the American Girl dolls. She seems to really love her baby, whom she has named Baby Jess/Jessie.

Sophia also got a tutu, which she put on immediately before opening anything else


Princess Sophia


Sam and Daddy with the new tank


My parents came over to spend some time with the kids. My mom has talked about how when we were all young how her parents always came to see us so we could be at home with our new stuff. I think that I am starting to feel as though I don't want to drag the kids all over the place trying to see everyone, so I think that I will request this in the future. That people are more than welcome to come to our house. If you have both sides of the family close how do you divide up the holidays?


After spending the morning at home, we went to Matt's parents in the afternoon for Christmas Dinner. By early afternoon Sammy had gotten a fever and had frequent coughing. I gave him albuterol which seemed to help the cough. We went over and had a delicious dinner. Shortly after dinner Sam started complaining that he was sick and had some diarrhea. His fever then got higher and he fell asleep. He slept for quite a while. Once he woke up he perked up and seemed to be feeling better.


Sophia taking Baby Jessie with her. She wanted to bring Jessie's high chair too:-)



Grandpa and Sammy cuddling on the couch


Cousins Naomi and Andrew


Sophia and Chris


Sophia and Andrew


Sammy, Daddy and "Baby Jessie" taking a nap

Papa

My friend Shannon came over with her little guy Tristan. The kiddos got to play for a while. Poor Sammy isn't feeling very well and was very sad that Sophia and Tristan didn't really want to play with him. Poor little guy was very sad. Sophia and Tristan have know each other since they were infants (probably like two or three months old). They get along really well and have a lot of fun.



My wonderful father in law blessed us again with his assistance and a little playtime with the kiddos. Matt is trying to finish up the electrical in time for the insulation guys next week, so his dad graciously came over to help.
Sam is getting sicker again:-( I placed a call to his primary today to see if she had any thoughts of anything that I could do to help this respiratory thing get better. She is going to be checking with his hematologist to see if we can try some type of medication to at least thin his secretions. Praying that we can, and that this doesn't turn into a full blown sinus infection. Praying also that this doesn't turn into increased apnea and respiratory distress. I honestly don't know that I could handle another week like last week....thankfully I know that I don't really have to, but God can....but still praying that we don't have to cross that bridge again.

"The Lord is Good, a refuge in times of trouble. He cares for those who trust in Him." Nahum 1:7

Papa's Birthday

The man of the hour



My niece welcoming him to the party


Sam and my niece Ava cuddling with Papa


(not the right order) this is when he first arrived


Greeting my nephew Jacob


This is a perfect example of my father in law. Just prior to him walking in the door Sophia got her fingers shut in the hinge side of a door:-( It was terrible, and I was so so thankful that her fingers weren't broken. She desperately wanted her Papa because she knew he would make her feel better, and he did:-)



Sleeping beauty sleeping on her daddy


The cake:-)


Blowing out the candles with his grandchildren's assistance


The photo book we made


The whole Weber family

We also got to celebrate my wonderful father in law this past weekend. This man is truly wonderful and I am so blessed to be a part of his family. He is kind and compassionate, loving, funny, hard working, dedicated, selfless, and most importanly a Godly man.
I can't even begin to tell you how much he has helped us and been there for us through all kinds of things. If he is needed he is there. He has been so helpful with so many household projects, and has also been willing to go to work a few minutes late to help us with childcare several times.
So this weekend we got to celebrate him and his truly amazing "Legacy of Love." Matt's brother Tim and his family along with ours made book for him entitled the legacy of love. It was one of those photo books. He seemed as though he really enjoyed it. I am thankful that I could take part in celebrating him. My sister in law Tracy planned the whole party. She is very talented at organizing and planning (something I am truly terrible at):-) So I was so thankful that she did this whole party, and just let me know what I needed. It went very smoothly and I think everyone enjoyed themselves. Thanks Tracy! You did a great job!!!

Grandma's Birthday

The kids were so excited to make paintings and a cake for Grandma's birthday. We called throughout the day to see if she was home, Sam kept asking me to check again. We brought the cake that the kids and I decorated over, and Sam was saying how Grandma could eat it "like I ate my Thomas cake" so she did:-) It was too funny:-)
We love you grandma!!!

Busy but fun

This weekend was crazy and hectic but so much fun! We had four birthday parties to go to, but only made it to three. We celebrated our niece's birthday on saturday as she turned 3. Sam and Sophia had a great time, and then we went on to celebrate a wonderful friend of mines birthday. A friend who has truly been a constant go to person for all kinds of stuff. She turned 30, and had a huge birthday blast, complete with a bounce house (who many adults bounced in, not me though with the back stuff) and pinata. My kids were in heaven. I thought that between swimming at Ava's party, and then the bounce house at Myriah's that they may sleep for days!!! THey of course didn't but it was nice to sleep past seven this morning.
Today we went to church, which was a little bit crazy. They did not have kid's church today so Sam was with us. Having him there was extremely distracting. But it was a great service. Message was about how being called by God to do something, that you don't always know His timing, and therefore you keep striving to fulfill His will in your life, and He will one day bring you to that thing that He has called you to.
This afternoon we swam at Mom's, then went to another party. The kids again had a great time running around playing. Unfortunately the mosquitos ate Sammy. I am surprised how many bites he got. Poor kid. Sophia and I didn't really get bit, but Sam probably has more than 15!!! They weren't driving him too crazy before he fell asleep, so prayerfully they will be better in the AM.

A new plan

I got a call from the hospital where they were going to do Sammy's scope next week, they are now thinking that they shouldn't do it there, and that they should actually do it in Boston. With his history of the hematoma they are concerned that if there were any complications that they wouldn't be able to handle them at this hospital, the strange thing is is that it isn't this tiny little rinky dink hospital. It is Newton Wellesley which is a relatively large hospital. I will get a call back from them on monday to confirm the new plan
He seems to be doing well today. He spent the day with his grandparents, and had a good time at the lake with them. I unfortunately have no pictures of this. Sophia and I went to a playground with her little friend Tristan today. She had a fun day too!!!

The plan for today

My niece and nephew are home from Florida!!! My kids just absolutely adore these guys as do I:-)



Waiting to hear the timing of the scope next week, was told I would hear today. They had said that if he was doing better with gagging or the complaint of food being blocked that we wouldn't have to do it. So I am praying that he stops.
He gets to go to the lake with my in-laws for the day. I am happy that he gets to do somethign so fun before the craziness begins next week. His new medicine prilosec is making him gag like crazy, and he is crying with it, but if it works then it is worth it right?
As for me I am out of work for another week! This will make five weeks which just seems crazy. I am so frustrated with this whole back thing. It is getting so old. But hopefully healing is on it's way.
Sophia is doing fabulously with potty training. She didn't have any pee accidents yesterday! She did poop but we are making progress

Kimball's Ice cream

Sam and Nana having a great conversation


Daddy helped Sam climb a tree


Sophia and Papa hard at work



Sophia and her Daddy


Sam and Ava having a race:-)

Today we celebrated Matt's grandmother's birthday with the family. It was a nice time, it was a little humid but it was fun. The kids had a great time playing with their cousins and running around.
And I unfortunately was injured at work today:-( so I am headed in to the ER to get my back/neck checked out. I am having some pretty severe spasms and cannot even turn my head:-(

4th of July celebrations

We kind of had a 3 day celebration this year for indpendance day. WE celebrated Sam's party on saturday, the 4th with my parents on sunday, and then on the 5th we had a barbecue with Matt's family. It was quite the busy weekend with the sleep study and all. All in all we had a great time...
We did have a little mishap while with the Weber's though, Sophia was attempting to get down off a picnic table bench and fell face first into the pavement. Poor little thing, the jury is still out whether or not she broke her nose. I actually contacted our primary on the way home, and she gave me instructions and we will just wait it out....

Oh how I love this face:-)


Sam is a little fish and each time we get in the water he does something more daring, he is such a joy to watch thrive


Sophia and Papa, exploring together. She has absolutely no qualms about getting in too deep when we are in a lake, and will walk until it is past her mouth


Sometimes no matter how hard I try I just can't get him to cooperate for a picture


Little Miss Firecracker herself:-) Don't you just love how perfect her bows match her shorts? My sister in law made them, check out her site: www.fiveblessedbows.com