Joint Hypermobility

I took Sophia to a rheumatologist on tuesday of this week. Because she has been having the joint pain for almost a year, and the orthopedic doctor does not believe it is structual we got referred to the rheumatologist. She was absolutely wonderful. She does not believe that Sophia has arthritis which is such an answer to prayer. There are a few things that are concerning to her though: the fact that she is stiff and the pain is worse in the morning, the fact that she had that undiagnosed eye pain in the same time frame as when the joint pain started (I guess this is very typical presentation of rheum. arthritis in someone her age). But her physical exam looks good in terms of saying that it is not arthritis. She did however say that she has some hypermobility of her joints. And therefore we will be going to physical therapy to see if we can strengthen her core muscles and help stabilize her joints better. We also will be going back to the pedi opthamologist to have a special test that is specific to rheum. arthritis too.
So we will just continue to pray that this heals and she feels better. Swimming this summer has seemed to help so hopefully between swimming and the PT we can strengthen her so much that we can resolve the pain.

Chest Pain???

Well Sam officially has a new complaint. I am not quite sure what the problem is yet though. Last monday after his IVIG he started complaining that he had chest pain. I kind of was thinking that he bumped his chest (although there was no mark) or that it was some type of reaction to the IVIG. I kind of didn't worry too much about it on monday night when we got home, and then tuesday and wednesday he didn't complain about it. So then I kind of just stopped thinking about it. I saw his PCP over the weekend at the hospital on my way into work, and COMPLETELY forgot ot ask about it:-( She was off yesterday and because he is so not typical in his complaints, the other doctors in her office really don't know what to tell me. He complained again about it yesterday, and asked me to rub his chest. So now I am really stumped and praying that it is really nothign to be concerned about...talking to the doctor again tomorrow....
In other news our garden is growing!!! The kids and I are so excited. They run outside every day and want to see what is bigger from the day before. We can't wait to be able to actually pick veggies and fruit from it.
I am doing ok. My liver studies from last week have gotten a little more elevated:-( This pregnancy I am really realizing how God truly is in control regardless of what the medical professionals say.
Last week wednesday after preschool a bunch of us mom's went to Dunn's Pond. There were 9 moms, and 18+ kids! It was a lot of fun. The kids had so much fun. My two absolutely love the water. I foresee a lot of swimming this summer, as long as I am not on bedrest.

Well child check up

Sophia had her 3 year well child check up today! I still can't believe my little peanut is growing up. She is 28.7lbs and is 36inches tall, she is just about in the fiftieth percentile!!! Not bad for my little failure to thrive baby:-) She is above and beyond for her age as far as language skills, recognizing shapes/colors etc.
We did have some concerning issues though. I have noticed for a very long time that Sophia has a very strange gait when she is walking, and especially running. I have mentioned it in the past to the doctor, but it has never been thought to be any big deal. I again mentioned it to her while we were there and she had her running up and down the hall of the office. She then saw what has been so concerning to us, and seems to be concerned herself.
We origionally were going to be seen by the head of pediatric orthopedics at Children's on June 3rd but the doctor was adament that she be seen sooner and therefore we will be going to see his colleague April 15th. I am anxious about this appointment but praying that all will go well. I just don't want her to have the frequent stumbling, and more recently she has been complaining that her legs hurt. She is incredibly fast and I don't want whatever this is to hinder her. Please say some prayers for my little princess

Prevacid

We restarted the prevacid with Sammy yesterday. I am not sure how long it will take to work, but I am praying that it will be fast. He seems to be less irritable today, and hasn't complained of pain when he isn't eating, I guess we will see when we eat supper.
I went to work today for a few hours. It still is such a hard pill to swallow that I have been unable to work for so long, and still here I am not doing "my job" or "real" nurses work. But I am truly thankful that I am able to do something and that the hospital is accomidating my limitations. I got word today that the specialist I saw a couple weeks ago (who I thought was a complete wasn't of time) has recommended that I restart physical therapy, and that it is very agressive to retrain/strengthen those muscles around my back where the torn discs/bulging discs are. So they are sending me to a PT place that I guess back injuries are their whole focus. Praying that this gets everything back in place for me. That I can get back to baseline and get back to a normal life.

Psalm 90:17
May the favor of the Lord our God rest upon us; establish the work of our hands for us--yes, establish the work of our hands.

Surgery Date and chest pain?!?!?

Yesterday I heard from the ENT's office that Sam's surgery will be January 3rd. It feels like it is forever far away. I am praying that Sam doesn't have many apneic spells between now and then. I brought my sister and nephew to the doctors office yesterday for my nephews appointment. While there the doctor (also Sam's doc) asked how he was and said I can tell you are not sleeping. Did I look THAT BAD??? Apparently! Anyways I mentioned how he was coughing more, and she said she wanted me to bring him in yesterday. So I brought him in, she said he had some gross looking fluid in his right ear, but that it wasn't infected. When they checked his blood pressure, it was 132/80! It was this high when we had IVIG last too!! Not sure what this is about. She also started him on antibiotics for another sinus infection! So we started them yesterday. I am praying that it helps. I all but BEGGED her to change the settings on his apnea monitor, and I am praising God that she did! She made me promise that I would use it all the time now. So for now we will go back to using it always, and praying that the apnea doesn't get too much worse.
Today he woke up and was complaining of chest pain! It really scared me. OUr primary was off today, but I called the office and spoke with a nurse. She essentially said to wait 48hrs to see if the antibiotics helped with the chest pain! I wasn't loving that answer. So I texted his doctor:-) I know totally terrible that I did that, but I was really anxious. So she had me bring him in to the actual hospital and checked his BP, and also saw her. His BP was 116/54 today, much better!!! But the chest pain just seems to be his reflux acting up due to the antibiotic. Thank goodness!!! I guess I can add this to his list of weird stuff he does, zithromax gives him chest pain.
We FINALLY have snow on the ground! I can't believe living in Massachusetts that we haven't had it sooner. But it is so pretty.

Cousins

Sam and Sophia got to meet Darius today. Sam was beyond excited. Sophia was playing the little mommy as far as covering him and making sure he had toys. And then she wanted him in his bed because he was sleeping. Sam was much more interested in holding him and snuggling with him than I expected. He was asking if he could hold him as soon as we got there, and then whenever he wasn't holding him he was asking to. Even a friend came in to see Darius and Doreen while we were there and Sam said that her time was up after five minutes or so!!! It was so funny. He held him a majority of the time we were there and he was in his glory. He has been asking for about the last six months or so when we are going to have a little baby for him, I am sure that this experience is only going to exacerbate this:-)
We had a relatively uneventful visit medical wise today at MGH. There were some other things going on that I will write more about tomorrow. And then there is the fact that the pulmonogist called while I was on my way home and left a message saying he wanted to discuss Sam's sleep study with me. Now I am trying not to be nervous about it, but I kind of am. We have an appointment with the pulmonologist next week (which is when I was told that he would review it with me), so now that he has called I am wondering if there was something on the sleep study that is more concerning to him and he wants to work on it before next week?
My verse for the day:
Phillipians 4:6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your request be made known to God

Trying to have the right attitude

So I am struggling with a bad attitude this week. :-( I was so hurt and disappointed when we asked someone for help this week, so that we would have someone to watch Sophia while Sammy was in the hospital, and when this person said no, it made me furious, not to mention was so hurtful. I keep telling myself not to question others choices, but it is so hard sometimes. I know that if someone said to me could you watch my baby, while my older child is in the hospital for a couple hours, I would do whatever I possibly could to help. So it is hard for me to understand when people won't help when it is so obviously needed. But all that aside this has reminded me this week that God has filled my life with some amazing friends and family that are willing to help. And I am so incredibly blessed.
In His perfect timing as always, after we learned that we still needed to find someone, a friend called and heard how upset I was by my voice, and said hey why don't I take her. What a blessing! And so it was perfect. Sophia had a wonderful time, and I was able to not be concerned about her knowing that she was being loved on completely.
On this journey with Sam, we have just been blessed so richly wish so many people that give of themselves so selflessly. Another friend when she heard I was looking for someone for Sophia, also offered. God has filled our lives with some amazingly wonderful people, who love us and are willing to do whatever they can to help. I am just so touched by so many. And I have to focus on that, I just have to...
Onto the rest of the story, so Sammy and I went up to the hospital (which by the way, since it was our local hospital and our pediatrician) he was super excited about, another tremendous blessing:-) Anyways we got up there and he got all hooked up to the monitors and we watched movies. He had more than 40 alarms in about a half hour time frame! I said to the pediatrician in the morning, see this is why I don't sleep! He had 3 episodes where he stopped breathing for more than 20seconds, and many more episodes where it was less than twenty seconds. The doctor seemed suprised at how many there were. She asked when we would be going back to see his doctor at Childrens and when she heard that it wasn't for two weeks, she decided she was going to contact him herself. Not sure what her thoughts/plans are....I am kind of hoping that we have a concrete plan in place by next week. I am praying that sometime soon we will be able to sleep at night without having our hand on his chest to make sure he is still breathing.

The waiting...

After a very stressful last four nights, of Sam having extreme difficulty breathing I am waiting anxiously for doctors to call me back. I have spoken with nurses and with our primary but am now waiting for the pulmonologist and ENT. I just am so tired of him having to struggle, how can he be healthy if he can't even get a restful night sleep. I am not sure where we go from here. Matt and I have discussed calling 911 when it happens so it is witnessed and documented by someone else professionally, we have talked about the ER, and also about video taping it when it happens to show to his doctors so that they see how much he is struggling. But today we are just waiting. Waiting for answers.....

Rough Days

This past week has been really rough:-( I try not to focus on the negative, but sometimes especially when I am tired I get overwhelmed. The last 3 days especially have been terrible at night with Sam. Sam has been struggling so much to breathe while he is sleeping. It is so horrifying to watch him struggle just to breathe. Last night I was at our church helping make pumpkin rolls until 2 in the morning, Matt had kept the phone with him just for in case he needed to call 911, if he couldn't help Sam!!! He never actually turned blue (like last winter) but he turned red and then really pale.
I slept with Sammy the last several nights with my hand on his chest, just to make sure he did continue to breathe. Early this morning for about an hour before he woke up I layed there with the sunlight streaming in, and just watched the struggle, and watched the multiple 10+ second pauses in his breathing!
This is SO HARD!!! I am so tired, and frustrated and feeling like there is nothing that I can do to help him. I want this struggling to breath to be over. I want him to go to bed at night, sleep well, and wake up feeling fully refreshed in the morning. I don't want the constant fear of the what if's that we have been dealing with this week.
I am ready to beg for the tonsils and adenoids to come out. If that is going to help him, then I will get over my terrifying fear. I know that God is here with us, that God's plan for Sam and for us is truly perfect, but what I don't know is what that plan is, and I am struggling to deal with not knowing.
These photos were taken by a wonderful photographer. If you are local and want someone to do amazing photos for you that just catches the essence of each person just go to www.sgrahamphotography.com

Terrified...

So yesterday was my grandmother's funeral. Sam slept later than normal and then came downstairs complaining that his belly hurt when he walked, and he was visibly uncomfortable. I pressed on his stomach which greatly increased his pain. To say at that moment that I was terrified would be the understatement of the year. As a nurse my first thought was appendicitis, and then of course my brain flew threw thoughts of bleeding issues is he needed it removed, it rupturing and him having a septic infection which he wouldn't be able to fight off, etc etc... It was horrible.
I quickly made the round of calls to his doctors. And waited extremely anxiously for them to call me back. Thankfully our primary called back and I was able to speak with her on the phone. She was wonderful as usual. We ran through all of his symptoms, and my fears. She reassured me multiple times that she thought he would be ok as we went to the funeral. She also researched where I should go (in relation to the funeral) if something happened while there. She made sure I had all of her numbers to get her immediately if needed...
We then went to the funeral and she said we could come immediately after regardless of time to see her. And that is what we did. Essentially once we saw her was that it was his colon that was inflammed/irritated. After speaking with her we decided that it was ok to be at home, and again was given a bunch of things to look for and to call her if there were any issues.
Today seemed to be a better day today. He isn't eating much at all, but there have been no explosive stools, and no fever. He has pretty low energy and I feel like he is kind of pale but all in all he is doing better. And Dr V being the wonderful doctor that she is called tonight to check on him, and again said that if I needed her to give her a call.

More bleeding, more sickness, and more questions

Goodness, it feels like I have too much on my plate and am feeling so incredibly overwhelmed. Sammy started having explosive bloody watery diarrhea today, as well as his gums were bleeding. This is something we have NEVER dealt with before so it has been totally upsetting and scary to me. In the past there has been some bleeding if I brushed his teeth too hard, but today the bleeding was completely unrelated to anything.
I called his primary and told her about the diarrhea/bleeding thinking that she would possibly watn to stop the antibiotic. But at this point she wanted me to call the hematologist and GI. Both of these docs called me back with differing opinions: the hematologist believes that the increased bleeding is related to him being on zyrtec even though I was told that this would be fine for him to be on.:-( So she said to take him off it, and to wait a couple days to see if it gets better. If things get really bad with bleeding to bring him to the local ER. The GI doctor is unsure of what to do right now. I am supposed to call in a few days if he is still bleeding.
So I am not sure where this leaves us with Sam. Apparently we are going to wait this out for a few days as long as he is stable. And pray that all of this resolves.
We are also in the middle of planning/preparing for my grandmother's funeral on wednesday. Please keep the family in your prayers as there are many people traveling from all over. Please pray that Sammy is doing well enough to be ok for the funeral as well.

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

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

We are.....

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

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!!!

Cardiology

Well I hate to sound whiny and complainy but let me tell you that cardiology appointment was a complete waste off time. The nurse was fabulous and seemed very concerned when telling her what had been going on with Sam in the past several months. The cardiologist on the other hand, wasn't in the room for five minutes, didn't listen to the whole story, just quickly placed his stethescope on Sam's chest and declared that none of this is cardiology related. That's all fine and good, but how do you know??? Mom has significant heart problems and you can't HEAR it with a stethescope!!! Anyways good I hope he is right but it doens't seem as though he did a good job to rule out the issue.
I am finally starting to feel better. Went to an acupuncturist and that made a huge difference in my lower back. A lot of people are afraid of acupuncture but this is my second time and both times I have gotten really great results. I just wish it wasn't so expensive, or that insurance covered it or something. Oh well, at least it is better.
I haven't taken any good pics in the last few days but hopefully today can get some good ones of my little munchkins. Sammy went to the campground yesterday with Matt's parents, but unfortunately the weather was terrible and he was bored and Matt had to go get him. Better luck next time I guess....

Tornados, thunderstoms, and rain

Goodness what a crazy week of weather we have had. We have had two tornado warnings, multiple thunderstorms and lots of rain! I can't imagine if we lived like this all the time. God bless those people in the midwest who have to deal with the tornados so often!
We are doing fairly well. I can't help but think there is something going on with Sam, but it hasn't quite declared itself yet. He is so irritable and has been complaining of random things that hurt. Low grade fever, a cough that started last night, a tummy ache...We shall see
I am trying to work up the courage to potty train Sophia. She is probably ready, but I just don't know if I am, for the accidents part. But I am just praying to get the courage to just go with it, and see where it takes us.
I am still battling these crazy back spasms but this morning praise God they seem to be getting better. I go back to the doctor today to see when they are going to let me go back to work...
We have the much anticipated cardiologist appointment tomorrow at Children's. I am certainly not sure what to expect tomorrow. I am not completely sure what the concern is here. I am praying for lots of answers tomorrow. I am starting to really wonder if we should see a geneticist with Sam. It just seems that there are so many random issues with him, that maybe there is a genetic condition that ties them all together? I don'tknow just a thought.
Have a blessed day!!!

Cardiology

Well after seeing the ENT last week and him saying we needed to see a cardiologist, I am happy to announce that we have an appointment this week!!! I am just so thankful to God for opening the door and allowing us to get this appointment so quickly! I am not at all sure what will come of this whole cardilogy thing but we are praying for good reports for Sam. It seems like the older he gets the more specialists we are acquiring, which brings me to my next point: I am just so thankful for good insurance and good hospitals and doctors that can take care of my special boy, but more than that I am praising God for all of His provision for us and for Sam.
I am still struggling with the back/neck pain and muscle spasms. Went back in today and the doctor has me out of work through friday, he prescribed another muscle relaxant, and really reprimanded me for not taking the other one as frequently as prescribed. But I hate taking medication so that is why I hadn't taken it, but now I will. I also went to a new chiropractor who was wonderful, she said my back was a mess, which I already knew but she seems to think she should be able to get me back in alignment with frequent visits over the next three weeks.

ENT update

Well we went back and saw the ENT from CHildren's today. I am not quite sure how I feel about the appointment. WE went there thinking that we would get the date for his surgery for the tonsils and adenoids and to get the results of the sleep study. WEll the results of the sleep study were good, so they are saying there is no brain involvement for the apnea episodes, and that there is no obstructive sleep apnea. But now he is wondering if there is some kind of cardiac cause. So now they are trying to get us in to a cardiologist as soon as possible. I got a call from the primaries office saying how they wanted us to go to Children's instead of MassGeneral because we could get seen sooner. So now I am wondering what they were told and why it has become like a huge priority to get him seen quickly?
The other thing is that we will return in two months to the ENT to determine when they will remove the adenoids, or if they will at all....It is ALWAYS something with this little boy of mine:-)