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.

Sounds more complicated than expected....

The most recent time we were at the hospital, over the winter. Just hanging out and taking a nap


Posing with one of the nurses. He has them ALL wrapped around his finger8-)


Talking to Daddy on the phone last year when he had the scope done that lead to us really knowing that he had a bleeding problem...


Since we couldn't go play outside, Meme' took him for a ride on his IV pole8-)


Thrilled to pieces with his clear diet: He was so excited to eat as many popsicles as he wanted

Had a lengthy conversation with the charge nurse where Sam will be having his endoscopy on tuesday. She was confirming with me the details of the plan, and going over the hematologist's plan to pre-medicate Sammy for the procedure to help prevent hemorrhaging. Only I wasn't informed of this plan until this nurse discussed it with me. She also wondered if Sam would be staying overnight just to be observed which makes sense but I didn't even think about this, and GI doc didn't mention anything about staying over, so I am not sure what the plan will be now. If they are going with the hematologist medication plan we have to go in a couple of hours earlier so they can give him the medication via IV, if they don't then we just have to go in an hour prior to the procedure. Sam of course doesn't mind staying over in the hospital, he thinks it is kind of fun. As seen above in the old picture:-)
I am thankful that I will be able to stay with him until he is asleep, so at least he won't be afraid or feeling alone. And they allow me to be with him before he wakes up so I will be there when he opens his eyes. They will be intubating him which always makes me nervous but I know that God will be with him through it all.
It is so strange, this emotion of fear. I know that God has called me to not be afraid. But talking with this nurse tonight has certainly made me anxious. She kept asking me all these different questions about each body system and since the last procedure there have been several new issues that have arisen: the difficulty regulating his body temp, the increased bleeding, the difficulty with swollowing with gagging/vomiting, the apneic and bradycardic episodes....
Trying to F.R.O.G- Fully Rely On GOD!!!! Ps. 22:8 - He trusted in the Lord, let Him rescue Him; Let Him deliver Him, since He delights in Him!

GI

Can you guess what this is???

Sammy built a "pretend campfire" for his sister and his friend. He is already a little outdoorsman just like his daddy


Alex and Sophia: Best buddies


Sammy is so proud of himself that he can go down the fire pole all by himself


Sam taking Sophia and Alex to the playground, and holding on to keep them safe:-)

I must totally give God the glory for the wonderful doctors that He has given to us to take care of Sam. As I said I was so very concerned about the colonoscopy for Sam, in light of the hematoma/hemorrhage that occured previously. Well today I spoke with the GI doctor at MGH and he was so wonderful. He listened to all of my concerns, didn't try to change my mind, and essentially validated my feelings, and agreed that the colonoscopy would be unnecessary at this point. So at this point tuesday will just consist of the endoscopy and baring any issues with anesthesia or bleeding we will be home tuesday evening. Please continue to pray for this situation.
In other news my poor Sophia hit her face hard on the train table this evening.:-( She looks absolutely pitiful. I was questioning whether she may have broken her nose but I am unsure. We did some ice and some pain medicine, and she is sleeping for now. We will see how it is in a while. Please pray also for her, and for a speedy recovery.

Joan

Sam and Joan making their playdough creations

Snake


Panda


Lion

We found a wonderful babysitter a few months ago. The kids absolutely love her and we are so thrilled to have her. Unfortunately Joannie has been battling cancer for the last several months. And had a large tumor removed from her leg a couple of weeks ago. We haven't seen her in several weeks as she had been in the hospital, and then had been unable to walk. But this week Joannie has come back. She is not able to do a ton, but we enjoyed having her come play:-) We have been praying for God to heal her, and we are so thankful that she is doing so well.

Playdates and GI update

Taron wore a helmet while Sophia was driving:-)



When we moved we had a couple of rolls of wrapping paper that got torn and wrinkled. I just taped it to the table and let the kids paint it. They had a blast.



I don't even have a title for this post. But wanted to update what has transpired the last two days. After speaking with our primary MD about Sam and the plan to do the scope, and letter her know my concerns, I placed a call to the GI doctor yesterday at MGH. My message essentially said that I don't want to do the scope (unless they can give me a strong argument that they will find the problem) unless absolutely necessary due to his bleeding last time. I am ok with them doing the upper GI/endoscopy but the lower is so scary to me. Of course today the doctor called back while I wasn't home. But it sounded like he totally heard my concerns and agrees with me sort of. He still wants to do the colonoscopy if Sam's diarrhea continues through tues when the endoscopy is scheduled. (He started with diarrhea on saturday).
The last two days he has actually started to eat again which is such a huge answer to prayers. He has actually said that he is hungry.:-) The prilosec still seems to be gagging him, and I am not sure if it is helping him get hungry or if he has just not eaten well for so long he is feeling hungry, or if God has healed him. He is still complaining that something is blocking the food from going down but at least he is eating.
I have been so blessed this week by my friends. We have had several playdates, although I don't have pics from them all. It is such a wonderful feeling to be surrounded by such wonderful women, who encourage and inspire me.

Joyce Meyer

I received a devotional called "hearing from God each morning" by Joyce Meyer last Christmas. And there have been so many things that have just grabbed my heart. I know that I am not reading this book by accident that it was totally God's perfect plan for me. But as usual I am suprised by how He speaks to me. The scripture for today: Depart from me, all you workers of iniquity, for the Lord has heard the voice of my weeping. The Lord has heard my supplication; the Lord receives my prayer. (Psalm 6:8-9)
And then Joyce writes "When we pray God hears us, and He answers. It is important that we are as confident of that as David was when he wrote the verses for today. You can live with confidence as long as you know that God is on your side and that He will help you win your battles in life. You are not alone, God is with you!"
It is such a simple well known truth, but so so easy to lose sight of when you are in the midst of a trial. So often I am focusing on the fears that I have regarding upcoming procedures, complications, illnesses etc with Sam. I forget to focus, on the fact that God has carried us through all of it, that God has given us wisdom and direction, that God has made Sam to be this amazing little boy who truly does have the joy of the Lord in his affliction. I am blessed to be a part of his life, I am blessed to be called his mom. I am blessed to be witnessing the miracles that God is working in his life.
So this week as I wait for the doctors call about the when/where of his procedure, I will not wait in fear, I will wait in anticipation of what God is going to do next!

If....

If I had my Child To Raise Over Again
By Diane Loomans

"If I had my child to raise all over again,
I'd build self esteem first, and the house later.
I'd finger paint more, and point the finger less.
I would do less correcting, and more connecting.
I'd take my eyes off my watch, and watch with my eyes.
I would care to know less and know to care more.
I'd take more hikes and fly more kites
I'd stop playing serious, and seriously play.
I would run through more fields and gaze at more stars.
I'd do more hugging and less tugging.
I'd see the oak tree in the acorn more often.
I would be firm less often, and affirm more often.
I'd model less about the love of power,
And more about the power of love."

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

This little lady...

ONLY had ONE ACCIDENT IN HER PANTS TODAY!!!!

We are.....

Just hanging out waiting for the calls from the doctors about the who, what, when and where of the upcoming procedure(s)

GI update and Coordinated Care at MGH

We went back in to MassGeneral today and saw the GI doc as well as the pediatrician and NP in the coordinated care clinic. I will go through each appointment...
C.C.C docs talked alot about the possibility that this complaining about food being blocked is somehow related to his tonsils, although they both said yes, his tonsils were big but not huge. The left tonsil is irritated and inflammed but not infected. They recommended telling the ENT about the recent complaints, and both feel like the likelihood of him needing his tonsils out is pretty good possibility. So I left a message with the ENT to see what his thoughts are.
GI is pretty concerned with the recent events and Sam's complaints of belly pain and complaints that there is something blocking the food from going down. They are changing his prevacid to Prilosec to see if that changes anything. The other thing is they are going to scope him again:-( This time they will not be doing the colonoscopy but just the endoscopy. The risk of him getting a hematoma or bleeding from this is minimal.
So now we are just praying that the prilosec works, or that God heals him and we don't have to put him under general anesthesia AGAIN!!!:-(
It is so hard to not get discouraged and overwhelmed with all that is going on. I am trying to stay focused on God and His goodness, and the knowledge that His Will will prevail in this situation. Please pray for my boy please

Bleeding again 8-(

It has been a busy few days, this past week we had VBS at our church, and had over 200 kids come! It was so amazing to see God working in the lives of young children. Sammy was actually old enough to go this year and he had a wonderful time when he felt healthy enough to go.
Unfortunately this week we have started to see Sam bleeding again. He has had many bloody noses this week, and on friday I was getting concerned so I called his hematologist. She wanted us seen by his primary, so we saw her, who also wanted to check his stools for blood. So now we are having bloody noses and bloody stools. The bleeding disorder must be rearing it's ugle head at us this week.
We head into Boston monday and tuesday for three different doctors appointments. I am praying that someone can find an answer to this, or that our Lord will heal him.
Sam said the greatest thing the other day, he said "Mommy people who don't ask Jesus into their hearts are so so silly!" I am so thankful that Jesus is so real to him and that Sam is already building his relationship with Him. I can't wait to see what God has planned for this amazing boy of mine. It is amazing how God reminds me that He is still here even through the midst of all the worries when something is going on with Sam
Have a blessed day!!!

Odd Pine Farm

The second time we filled the bucket, after Sophia dumped it out the first time


The munchkins and I


Auntie Deanna with the kiddos



Today we went blue berry picking at Odd Pine Farm. This farm is quite a cool place and has been around for 51 years! They had several varieties of blueberries, and they were pretty tall so there was no bending involved, which was great for my back, which has really been pretty uncomfortable the last few days.
There was a little old lady that was also picking. The kids absolutely loved her and kept talking with her while we were there. She really seemed to enjoy them, and the kids really enjoyed her.
We got quite a few blueberries but I plan to go back one more time to get more.
Potty training has gone well on day 6. Sophia has done well getting to the bathroom multiple times. She did have two accidents and also a stool but we are making progress slow and steady.

Potty Training Chronicles Day Five and Heywood IVIG

Sammy and Carol (at his birthday party)

Today was NOT a good potty day! Sam had his IVIG today at Heywood, and therefore Sophia was with a friend. She didn't go on the potty once while there.:-( I am disappointed but oh well.
Sammy did well today with the IVIG. Nurse Carol was there and he just loves her. He went running down the hall and jumped into her arms, it made me so nervous, since her due date with baby number 3 is tomorrow, and I was afraid that she would get knocked over. She got the IV in on the first try, the labs were drawn easily. Sam complained all day that he didn't feel well, and actually stayed in the bed all day. He said he was so sick everywhere. He had a period where both his temp and heart rate increased but then they normalized again. I am not sure what will happen with the IVIG, if we will end up switching brands or something else.
Poor little guy stayed in the bed all afternoon, but when my sister Deanna got there he totally perked up and climbed all over her for a few minutes. Hoping that whatever is brewing will be averted since we got the IVIG today.

~~~Moses the SNAKE~~~

Sammy got rid of the floaties and was jumping right into the pool, going underwater, and kicking up to the surface and swam to Auntie Deanna.



Playing with the hose


Pretty Princess

Loving playing with the hose

Sophia flirting with another little boy in the pool:-)


Sammy and Auntie Nana


Today we went over to Dennis and Johanna's house and met their new baby Moses. Moses is a snake. Sam absolutely loved the snake, and it appeared that the snake liked him as well. He wrapped itself around Sam's arm and even tried to get in his shirt a few times. Sophia was more cautious about the snake but would pet it while others were holding it.