Happy Birthday my Sweet Doodle Bug

I can't believe my little miracle man is 5 today! I look back on all that we have experienced, all the sickness and fear, all the questions, and am reminded that God has walked with us through all of it. I am thanking God today for this amazing little boy, and for the priviledge I have had in being his mom. I have learned to be a better person, a better friend, and most importantly my faith has increased. Thank you God for this little boy, and thank you Sammy for being who you are. I LOVE YOU to infinity and beyond.........

Rain rain go away

I feel like we have been cooped up forever! The kids are so cute, they keep syaing that it is going to rain for "40 days and 40 nights", I am so glad that they are remember their Bible stories and applying them to real life. I am obviously praying that we don't have rain for that long. A day or two here or there is not too big of a deal but a week on end, it is getting a little old.
We are doing well. I am so so thankful that Sam's burns are healing nicely. The blisters are still closed and I am of course praying that they stay that way. We will have to be extra careful if they do break open, as his infection risk is higher than normal. But so far so good, and he is doing really well with being careful of them.
I will be 25 weeks pregnant tomorrow! This little munchkin is growing and I feel like I am huge! I love it though! I am praying that the baby continues to grow really well and that I can make it to term this time. I love being pregnant and the miracle that God allows me to partake in, but my physical body doesn't like it at all.
We have a busy couple of days with four parties to go to this weekend. I will try to post some pics of this week tomorrow before the craziness of the weekend. Hoping and praying that you have a blessed day

Garden

It feels like we haven't seen the sun in a month, but all this rain certainly is helping the garden to grow. We have pole beans, sugar snap peas, tomatoes, zucchini and summer squash plants already growing. And someone from Matt's work gave us a Russian tomato plant, I guess he brought over seeds from Russia and they are now growing the plants. I am excited to see what the difference between their tomatoes and ours are. When there is a break in the rain I will take some pictures:-)
We are all doing well. Sammy has his kindergarden screening this week. It is so hard for me to believe that my baby is growing up and will be in kindergarden in the fall. Sophia is such a talker, we have these amazing conversations with her. We are awaiting a referral to go seea rheumatologist to see if they can figure out the cause of her pain, we are also seeing the head of orthopedics at Boston Children's next week. So please be praying about that.
I am feeling ok. I did have the UTI last week which was absolutely terrible. I can't believe I am 20 weeks along with Baby Surprise. As we get further along I am starting to get nervous but am praying that this pregnancy is the one that has no ambulance trips, no complications, no NICUs, no crisis' situations, no Magnesium, no pre-term labor and need for steroids, no pre-eclampsia or HELLP syndrome. I would be just beyond thrilled to go full term this time, be able to stay home until the end and go into labor like a normal person:-) I have actually started another blog as well. The new one is www.weberfamilylife2.blogspot.com
I was thinking that I would share this new blog once I announced I was pregnant but I haven't shared it until today. At some point I will probably transition over to the other one. Come follow my new one please:-) Leave a comment and let me know you came

Gardening

WE have planted our garden in the last week. The kids were so excited about it, talking about it for days and days. When we finally got to the actually planting part they were interested for about five minutes TOTAL!!! Sam planted a few watermelon seeds and Sophia planted nothing. She just kept rearranging seed packets. We planted: Sweet corn, broccoli, zucchini, summer squash, pole beans, peas, cherry tomatos, beef steak tomatos, watermelon and one more thing that I can't remember:-)

ENT and GI

ENT appointment went really well! The doctor was pleased with how his throat looks and the tubes look great in his ears. They did do a hearing test, and his hearing is FINE!!!! Praise God! So that just means I have a kiddo who I need to retrain to like things quiet:-) He did say that he definitely wants to repeat the sleep study so we will see when that happens. The other interesting thing about this appointment was when we were talking about his tonsils. After the surgery he had stated that one of Sam's tonsils was green and he hadn't ever seen anything like that before. I questioned him about that today to get more information. He said that the particular bacteria that was growing on his tonsil is not one that is typically grown on humans, but because of his immune dysfunction that is why he grew that strange bacteria, but now that it is removed it won't be an issue.
He also really cried that his stomach hurt today after lunch:-( He actually didn't even stand up straight when we got out of the van and was walking hunched over. So I have another call into the GI doctor to see what they think we should do. It sure feels as though you get one situation resolved and then start on another:-(

Psalm 5:1 Give ear to my words, O LORD, consider my meditation.

The recovery process....STINKS!!!!

Sunday was a good day for Sam. Matt and Sophia came to visit which was awesome. It was so nice to actually be a family again. It wasn't too long before the kids were arguing and we were having to referee them. It felt so comfortable:-) I miss being a family and having us all together. Don't get me wrong I am loving spending the one on one time with Sam, and having the time to spend in the evening with my best friend, but I am a wife and mom and I miss being JUST that right now:-)
Monday my parents came to visit which was really nice too. They commented about how thin Sam is, and I guess I hadn't really noticed. I have been complaining recently at the last few doctors appointments that he had been losing weight but I had been reassured that he was ok. But after my parents left I put him on the scale, he has lost almost five and a half pounds! I know that doesn't seem like a lot but he was really thin to begin with, we can see all his ribs, when he sits on my lap he feels frail and boney.:-( Unfortunately this weight loss is probably going to continue for another week or so. He is now down to 32lb and is four years old!!!
Monday evening and night Sam got a little irritable before bed, he woke up twice last night in terrible pain. There was nothing I could do for him to help. I was praying, rocking him, singing, but he was just hurting too bad to notice. I called the doctors office, and they said that increased pain at this stage is completely normal. I am not sure if I agree but I am going to wait another day and see. The poor kid is so irritable. It just seems to me that if plain tylenol was able to manage his pain all last week when we had the surgery, why after a week is it not able to cut it anymore? Ugggghhhhh!!!!!!!!!!
Please pray for my boy tonight. That he is comfortable and pain free, that he can sleep well and feel better tomorrow. And also (the nurses informed me that day 10-14 are the biggest bleeding risks after the first 24hrs) that there will continue to be no bleeding. Thanks!!!

Post-op Day 5

What a week it has been! I am so thankful that God has brought us through this week and so blessed that we are no longer in the hospital. I wish that we could be home as a family and oh how I miss Miss Sophia snuggle time. But we have had a good week. God has protected all of us. It has been tough, but prayers have been answered repeatedly.
Today I am worried as Sam is acting worse today than yesterday. He is eating fair, and drinking not enough. He may be getting sick or something I am not quite sure. Please continue to pray for him as he continues to recover.
I got to see Sophia today. It was so wonderful to see her, but it was terrible when she left. I just feel so sad for her and for myself. The poor girl gets carted off often because of what is going on with Sam, and although we have wonderful family and friends caring for her, it is not the same as mommy and daddy. Please say prayers for her as well.
I got off the phone with my mother a little while ago, and she has said that she is taking my nephew Darius up the hospital. He is a month old now. But last night he started vomiting and today he is continuing to vomit and is lethargic. So please pray for him as well as his mom Doreen. Thank you!!!
God bless!! I will try to post some pics tonight:-)

Frustration

I have now been out of work for ten weeks. After several weeks of me telling the doctor that there was something more than just muscle spasms going on they finally did an MRI. The MRI showed that I had a tear in one my discs in my back, as well as some bulging discs, and edema on my SI joint. I have been going to the chiropractor, acupuncturist, physical therapy, and the workman's comp doctor several times. Multiple appointments each week, and it isn't healed. I had to see a differnt doc this week as the workman's comp doctor was on vacation. The new doc is saying that she believes that the problem is the SI joint, and that I am compensating elsewhere and that is causing all the pain. The frustration comes from the fact that I have seen a multitude of specialists and no one has said that the SI joint could be causing all of the discomfort. She has also said that it being out so long could make it take longer to stay back in alignment, that it could pop in and out before it finally will stay in place. I am just sick of this whole thing and wanting to get back to a normal life. Wanting to bathe my kids without pain, wanting to pick them up, wanting to go back to work...
Sam today is complaining that he is sick again too. Not sure exactly what is going on. He has bad diarrhea, which could be a stomach bug like a normal kid, or it could be something worse. I guess we wait until the morning to see how he does. But please keep him in your prayers

“And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.” 1 Peter 5:10

First Day of Preschool

He was so excited for his first day

Handsome Little Guy

A wonderful Christian preschool. I feel so blessed to have him be able to come here.




His first day went really well. They actually had the parents stay with them so that they were comfortable. Initially he didn't want to get off my lap, but he slowly got involved and interested in the things going on around him. There are 20 kids in his class with three teachers and an assitant. The school has been around for more than 20 years! So they have plenty of experience:-)
Unfortunately there were probably at least five kids coughing and more than that with runny noses. Some of the coughs were so harsh and junky sounding:-( All I could think about was Sammy being exposed to all of this. I am praying that he doesn't get sick, and that somehow this will improve his immune system.
Last night when I was reminding him that he had school today this was our conversation: Sam said "When are you going to come back? Do I have to stay all day?" My response "Yes I am going to come back at lunch time, why are you worried?" "No I will just miss you!!!" Goodness I love this boy of mine:-)

Jeremiah 17:10 I the LORD search the heart, I try the reins, even to give every man according to his ways, and according to the fruit of his doings.
Have a blessed day!!!

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!

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!

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

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!!!

Sam's new ride

A friend from work blessed us so much by giving this PowerWheels to Sam. He has really enjoyed it. His driving is comical, as he has crashed into the house, the steps, the bushes, toys, etc etc etc. But he loves it. Yesterday he made the comment "Mom when I don't have much energy I can ride my car and still play with my friends." It kind of brings home what the poor kid has gone through, and how aware he is of what happens to him. Thanks Lynn we love our Cadillac Escalade:-)