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.

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

Crazy friday

Tomorrow is certainly going to be an extra busy day. We need to be at the hospital for Sam's IVIG for 07:30. My friend Chris is taking Soph first thing in the morning so that she doesn't have to see them putting Sam's IV in. After his IVIG another friend will take Sam for me as Sophia and I have to go see an orthopedic doctor at Children's. IT certainly is going to be busy. I am anxious to hear what the doctors have to say about Sophia and to see what if anything they can do to help her. Please pray for a good complication free day.

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

Paint

Do your little people love to paint? My kids love it. I love the crayola paints, they enjoy them so much!
Sam and I are off to Children's for him to have his repeat sleep study tonight. Praying for great results


Psalm 46:10
He says, “Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”

Immunology and Pulmonology

Sam had two appointments today. One at Children's and one at MassGeneral. Both went fairly well. We saw immuno first. I think he may have been thinking about attempting a trial off the IVIG this spring, before he read the chart and recent trips to the hospital and heard about the sinus infections, URI's, etc etc. That would have been awesome to see if we could be done with this part of our lives. When he discussed it before he said he would only do it in the spring, as he didn't want him to go into the winter completely unprotected if his immune system wasn't going to kick in. So I guess that means another year of IVIG:-(
We then went to pulmonogy. THis appointment went well. The doctor was pleased with the fact that his sleeping has improved, and that he seems to have more energy and spunk. He said he wasn't "overly concerned" about his breathing, just slightly. I am hoping that we can not have to repeat the sleep study, but we shall see. We go back in three months and at that point they will decide if it is necessary. Or if I think he needs it sooner then I just need to call.
Oh guess what? They said he weighs 36.4lbs!!! He has gained his weight back! And he is 41 and 1/4 inches!!! Growing:-)

IVIG

Sam had his IVIG today and as it seems to be the trend lately they had a tough time getting the IV in:-( He cried as soon as they pulled the IV cart in, between the ER on friday and the surgery he is COMPLETELY DONE with the medical issues right now. Poor guy! We see the immunologist next week, I will be curious to see what his thoughts/plans are as we move forward with the IVIG, if/when their will be a trial off it again, dosage changes etc etc.
We haven't had any more bleeding since the mild bloody nose last night, so I am so thankful. We stopped the amicar last night, so I will be praying that we have no recurrence of bleeding now that he is off.
We had a wonderful playdate today with lots of friends. It wasn't planned to be this way but we ended up with 9 kiddos here today:-) My house is going to take a while to recuperate but I am glad that Sammy is feeling up to running around and playing and making a mess with his friends.
Preschool tomorrow, then another playdate, and then MORE SNOW!!! I am done with winter I have decided. The negative temps, and wind chill are bad enough, and then the snow is so deep the kids can't even play in it. Oh well! Spring is coming right???

Children's Hospital ER

So I have always tried to avoid the ER at all costs, after today if the suggestion is to go to the ER at Children's I will go in a heartbeat. I won't argue or balk about it.
AFter calling our primary's office the suggestion was to call the hematologist. Sam's hematologist was off so I spoke with the on-call doc. She was very nice, and suggested started the Amicar again, and also calling the ENT, and having them schedule an appt as soon as possible.
So I called the ENT's office, and they wanted us to go to the ER ASAP as they thought there had been too many bloody noses, too many days, and too close to the surgery date to eliminate the risk of him bleeding from his adenoids. So we travelled into Children's. We never even sat in the waiting room, they took us in immediately. They were thorough and kind. They were absolutely wonderful.
So they actually put a camera up Sam's nose and into his throat, and got a really good look at the surgical site. They determined that the incision sites were all healing very well. There was some blood at the adenoids but they believe it is just trickling down his throat from his nose. They placed a medication saturated gauze up his nose, that was supposed to help him clot. They then packed his nose and let us leave, although we have to follow up with hematology in the morning.

Post-op Day 6

Coolest puzzle ever! Auntie Tracy and Uncle Tim and their kids got Sam this awesome dinosaur puzzle for Christmas. We have done it several times each day.


This is Chantal and Andrew's dog "Rake". He is so sweet! It is fun having a dog


Sammy has been playing "Go Diego Go" on my computor


Sammy and Auntie Chantal built a card castle


Sam had a terrible night last night. I was convinced that I had made the wrong decision in not bringing him to the ER. This morning he seemed to have much more difficulty swallowing then he had had previously. Chantal and I made the mistake of looking in his throat. NOT PRETTY!!! We both were completely grossed out. I don't ever recommend looking in someone's throat that has had this surgery! It looks like pus is coating his entire throat and uvula, with scattered bits of green infectious looking material. IT is DISGUSTING!!!! So I of course called the on-call doctor again, and he kind of chuckled. Stating that they tell parents not to look in the throat because it looks so awful, but that what I was describing was completely normal.
His spirits/activity level got better throughout the day. But eating has been almost non-existent. I have been physically forcing him to drink, but I am sure he hasn't had quite enough fluids today. Adn then tonight he finally ASKED and WANTED to eat something. He wanted ice cream:-) And kept wanting more and more. So guess how much he ate? SIX SCOOPS!!!!:-) That will get him so calories.
Thanks for your continued prayers. I would also like for you to pray for my sister's baby Darius, who is now one month old. They are not exactly sure what is going on with him. But he is currently at Children's Hospital in Boston. They are doing lots of testing trying to figure out why he is anemic, has a distended abdomen, is intermittently jaundiced, and has had intermittent vomiting and now is having trouble stooling. Please keep him, his mother Doreen, and all the doctors caring for him in your prayers.

Released!!!

****UPDATED POST*** with pics
Paula and Sophia came around lunch time. I couldn't stop myself from smothering her with kisses. It was so wonderful to see her. I feel so guilty not taking care of her right now. It was so good to have her here and to cuddle and kiss her. To feed her and take care of her. It was terrible when she left:-(
While they were here Sammy started to get tired, I didn't think too much of it, but as the afternoon wore on I started to get more concerned. I eventually calleed the on-call surgeon (who thankfully was aware of Sam already) and told him what was going on. He said we could bring him to the ER but that there wasn't much he could tell me over the phone. So now we will just go through tonight and see how he does....
Sophia inhaling a pancake:-)




Sammy having some snuggling time with Auntie Paula

They let Sam leave Children's late yesterday! I am so thankful. Of course we do have to stay close by for another week, but just being outside of the hospital is so wonderful. He seems to be ok. We are at my best friends house and he drank about 7ounces of milk last night! It was great. He is also sipping on apple juice and tolerated all of his medicine since we have been here.
I can't get him to eat anything this mornign but at least he is drinking well. He slept fairly well. He woke up twice crying a little due to pain. But quickly fell back to sleep and slept until after nine!!!
I am missing Sophia so much! It is so hard to be away from my baby. I know she has been well cared for but there is nothing like snuggling and kissing her myself. My friend Paula is bringing her to see us today and I can't wait.:-)
I have more pictures to post and will do that a bit later. AGain thank you for all your prayers! Please continue them as he is still at an increased risk of bleeding throughout the next 10 days or so.

Surgery Day 4

Auntie Chantal came to visit and spoil us (AGAIN)

Sam did much better last night! Praise God!!! He vomited his evening dose of medications, but he tolerated a small amount of food, and few ounces of liquid. He slept really well.
I have been playing a game with him today, trying to get him to drink a lot of fluid. THey want him to have the equivalent of what it would take to keep a two to four year old hydrated, even though they think it should be more. They feel as though if he gets the required 24ounces in a 24 hour period that he will be safe to get out of here. So I have been lining up medicine cups (they each hold one ounce) and playing a racing game to see who can drink the fastest. It takes him like five minutes or more to swallow the whole ounce but he is working on it, and we are making progress.
There is discussion of discharge this afternoon or evening if I can get enough fluid into him. THey also decided that the amicar that he is on (to help him clot) could be decreased, as this may cause nausea. So they cut the dose in half!!! I am not quite sure how I feel about this yet, as I feel like if they cut that medication in half he is at a higher risk to bleed. But on the other hand I don't want him vomiting either, but they can always correct vomiting with nausea medicine and IV fluids, but bleeding would be more complicated....
Praying!!!

Surgery Day 3

Can you say LOTS of medicine every 4-6hrs around the clock?!?!? Poor kid has never had problems taking medicine but now is another story

Sammy is doing pretty terrible today. He started vomiting last night and they did end up restarting his IV fluids. He vomited each time he took his medications. They ended up switching some to IV instead of oral. He has slept a good portion of today.
He has a sore on his mouth (I was told it was probably a burn from the instument they used during the surgery) that is really starting to bother him today. We are constantly making him stop touching and picking at it. They prescribed an antibiotic ointment so hopefully it will get better quickly.
There had been some discussion about a possible discharge today if he drank and did well with his oral intake, but now that the vomiting is occuring it might even rule out tomorrow too.
The good thing is that he hasn't had any bleeding. The medication to help him clot has been working well and I am so thankful. Praying for a good night tonight and an even better day tomorrow! Thanks for your prayers

Surgery Day 2

We transferred out to a regular floor today. Sam is still being constanly monitored as far as vital signs and oxygen saturation. He currently has no IV fluids running but there is some discussion whether these will be re-started due to his poor drinking/eating today. He has peed a tiny amount since before surgery yesterday.
He seemed to be much more uncomfortable this morning than he was yesterday. It was pretty tough getting him to take any of his medications. He actually even spit some of them out. We have been trying to get him to drink all day but he just isn't having any of it right now. Praying that he starts to drink again.
We had some wonderful visitors today. Our favorite Child Life Specialist came this morning prior to leaving ICU. He was sleeping and didn't get to visit with her but I did. She was so sweet bringing him balloons, and a little kids laptop and a cute stuffed dog.
We also had a "music therapist" come see Sam today. She just came in and played her guitar and sang for Sam. He got to play the drum and cymbal during this time, and he did well although he was so so tired still

Success!!!

Sam came through his surgery with flying colors! He did really well. They pre-medicated him with medications that would help him clot appropriately and these medications worked really well. He had no bleeding that was out of the ordinary!!! He was laughing as he went away from us due the medications they gave him:-) It was nice to not have to see his eyes roll back in his head and have him go limp in my arms, but I was anxious about not being there for him while he was awake.
The doctor was very surprised to find that Sam's tonsil was "green and mushy." which apparently he hasn't seen ever before! Yes again, Sam has done something another doctor at Children's Hospital hasn't seen!:-) But at least that green mushy tonsil is no longer inside of him. The doctor said that they were much bigger than they expected and they looked like they were chronically infected. So prayerfully this will improve his frequent respiratory illnesses and the apnea.
We were supposed to spend the night in ICU, and had a wonderful nurse. Sam was pretty much out of it for the whole night. He denied pain for the most part. And was loving eating orange and jolly rancher popsicles
Thank you all for your prayers for our little miracle boy!!!

Antibiotics, IVIG and special friends

Sam was so so happy to see his friend Khadeisha. They had so much fun playing with the I-Pad:-)

So I met with Sam's doctor first thing this morning before driving into the city for the IVIG. She said he had very purulent drainage:-( So we have started our third course of antibiotics for this crazy sinus infection that we just can't seem to get past. It is crazy, last winter he essentially had one continuous sinus infection, which is what led them into wanting to remove his tonsils. We then started having all the apneic episodes, and that is what has convinced them to take out the tonsils. But the ORIGIONAL problem is what may prevent us from doing this! Uggghh. A wonderful friend said to me today that this might be God's way of telling us that right now isn't the right time to do this, so I am waiting on His guidance.
We went into Children's today to have his IVIG. They now have a beautiful new unit. We had a nurse that we weren't familiar with but she was wonderful. And of course our favorite child life specialist Khadeisha was there. Sam just loves her. She is going to come visit him when he is in the ICU next week. We are so thankful for her. I am not sure who the actual donor was, but many many Apple I-Pads were donated to Children's Hospital! Sam absolutely loved playing with it. I must admit I was pretty enamored with it myself:-) He played with one almost the entire time we were there.

Psalms 27:14 Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.

One week!

Officially the count down has begun. One week from today is his surgery. And although I am trying to remain positive and unafraid the things that are running through my mind are sad/hard things...
First the hardest part of surgery for me is when they allow me to go into the OR with him and they allow me to hold him as they put him under general anesthesia. There is something that is just horrifying to watch as your child's eyes roll back in their head and they get limp in your arms.:-( HARD!!! But I truly wouldn't have it any other way, regardless of how hard it is for me, I would never want him to go through that alone.
Second, the whole ICU part of this admission. We haven't been in the ICU with him before (praise God!!!) so I am wondering how he will do. The ICU is such a different atmosphere of any other area. I am praying that it isn't too traumatizing for him. And also that some of our friends/nurses/clowns/child life specialist are able to come see him to help him be more at home while we are there.
Third, the pain! Poor little guy! He has had a cough that has worsened over the weekend and now is complaining of a sore throat. Because of that he hasn't really been eating at all this weekend. I can't imagine how hard it is going to be after the surgery for him. He has already lost almost two pounds since thanksgiving.
And of course there is the whole bleeding disorder part of things. Apparently they will be pre-medicating him prior to surgery with the medication they used prior to the last scope that they did. And he didn't bleed after that so I am praying that the medication has the same affect. I know that there had been some discussion as to whether they would actually transfuse some platelets prior to the procedure. I am not sure if that is the plan or not.
We have been in the hospital so much with this little miracle boy of ours. And he always has the best attitude and a smile on his face. My prayer is that this will continue. The posted picture is one of my favorite pictures of him, it has his personality written all over it. He had just woken from anesthesia and was so happy. He is SUCH an amazing blessing to us, God has given us this amazing gift, and He has given him this wonderful amazing personality. I can't wait to see where God takes him in this journey.

Breath Of Heaven (Mary's Song) - Amy Grant

Sam is doing ok today. He is tired, but understandably so. The coughing/wheezing that has occured over the last few days seems to be improving. He seemed to have a little bit of blood in his stool today, but I am praying that this is not anything and that tomorrow will be a good day for him. I am starting to get a little anxious about his surgery, knowing that it is two weeks from today. Praying that the ICU isn't too scary for him at Children's. Praying that his pain will be well controlled, praying that there will be no hemorraging, and praying for God's will throughout this whole experience, and that I can shine God's light. Going through this Christmas season and the fears and health problems that have been going on with Sam, has really got me thinking about long ago.....
I have been thinking a lot in the last week or so about Mary and Joseph and the thoughts that must have gone through their minds as they learned that they were expecting a child, but not only a child, but the Son of God! As a first time mom there were so many things that I was worried about messing up. And now as I have two children, I look at each of them so often and ask myself if I am doing right by them, if I am teaching them as God would want me to. God bless Mary for her righteous heart, for carrying our Saviour, for obeying God's plan for her life.
Below a song that has spoken to me often through the years. It brings it back home that Mary was a mom just like me, yet she was chosen to carry my Saviour! Enjoy!!!



I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father you have come
And chosen me now
To carry your son

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now

[Chorus:]
Breath of heaven
Hold me together
Be forever near me
Breath of heaven
Breath of heaven
Lighten my darkness
Pour over me your holiness
For you are holy
Breath of heaven

Do you wonder as you watch my face
If a wiser one should have had my place
But I offer all I am
For the mercy of your plan
Help me be strong
Help me be
Help me

Sleep Apnea

Oh my goodness this sleep apnea is kicking my butt. After getting the results of Sam's sleep study last week, and definitely realizing that the surgery is needed because the apnea is "moderate to severe" I have become more anxious about it. Throw in this recent illness, and the CONSTANT alarming from his monitor last night and I am exhausted.
I spoke with his doctor this afternoon and she called down to Children's Hospital to see what the ENT on call recommended. His recommendation was to admit Sam to the hospital and to see if his oxygen level is affected by his episodes. So we will be heading into the hospital shortly after I pack a bag for Sophia, Sam and I. Thankfully I have wonderful friends who are willing to take care of our little princess:-)
I guess depending on how the sleep goes tonight at the hospital will determine what the next course of action is. If he requires a lot of oxygen and they are unable to maintain his oxygen level, then we will be transferred to Boston Children's either during the night or tomorrow. At this point I am not even sure what to pray for. If I pray for him to have a bad night so that they do the surgery sooner, then that means we will be in the hospital or at least away from home for Christmas, if I pray for him to have a good night, then they will continue the surgery out where it is scheduled and we will have a couple more weeks of misery...
I must add how blessed I feel to have such wonderful people supporting us through this time. Although I feel completely overwhelmed and stressed out, God continues to fill my path with people who just give of themselves so selflessly and bless us so richly. The wonderful couple who are taking Sophia for us tonight, are supposed to be going away to Cape Cod tomorrow, they are totally willing to change their plans to help us take care of Sophia. Thank you guys you are such a blessing!!!

Romans 8:37 (NIV) No, in all these things we are more than conquerors through him who loved us.

Phew what a week!!!

This week I have certainly been blessed by my faith. With the birth of a precious miracle, and with amazing friends (thanks Meg!), with all kinds of distressing info about Sam, I am just so thankful that God loves me and is carrying me through all of this stress. I can't imagine this life without God.
Monday
I was blessed to witnessed the birth of my beautiful new nephew, and reminded of God's miracle of life. My nephew is GORGEOUS by the way:-)



Tuesday
Sam and I went into Mass General for an appointment in the Coordinated Care Clinic (CCC) . This visit essentially was to review all of the recent events regarding Sam and his healthy. It was a good and bad visit. Health wise as far as multiple issues he is doing very well, except for the respiratory stuff. The CCC provides all types of support for families/children with complicated health issues. They help with insurance, coordinating appointments, making sure all the specialists are on the same page, and answering questions. They also deal with school stuff and making sure the school district provides appropriately for the child. That being said we met with a social worker this time (who we have never met before). She doesn't know Sam or I, and within a couple of minutes of her being in the room, she was suggesting that he have a Neuro-Psych eval to determine if he has any special needs, such as being on the autism spectrum, ADD/ADHD, etc etc. I was kind of put off by this. Feeling like she didn't really know Sam, and I was nervous that he would be labeled with something behaviorally just because he is an active 4 yr old boy. So I have been hesitant. I have spoken with some friends, and the pediatrician in the CCC. Essentially everyone is saying that it is really up to us. They don't see any red flags but it might be goood to have it in place because I guess our school district is difficult to get services if they are needed. My concern is wanting him to not be penalized for missing too much school, and possibly tutoring if needed. Anyone have any thoughts about this evaluation?


Wednesday
Wednesday was pretty normal. I received a call from the pulmonologist on tuesday but being in boston missed the call. When I returned the call the office was closed and he was off today! When I called his office the receptionist said "OH if he called you it must be really important!" Of course that gets the wheels turning in my head, and I start to get fearful about the results. But hopefully tomorrow we will hear the results.


Thursday
We went into to see Sam's GI doctor today. He is happy with how he has been doing. Although he wishes that I would have been able to tell him that Sam hadn't had any bloody stools since the last time we saw him. Had a great conversation about God and Christmas with him. It seems as though society is trying to make us fearful about wishing others a merry Christmas, but I WILL NOT BE AFRAID! I will wish people a merry Christmas and be proud of my faith:-) I did end up talking to the pulmonolgist on the phone. He stated that Sam had moderate to severe sleep apnea, that he has elevated CO2 levels, and that he has decreased oxygen levels. HE said that this was so concerning. He recommends strongly that we have his tonsils/adenoids removed.


Friday
Today we had the much anticipated ENT appointment. Thankfully I was able to bring his sleep study report with us. And although the pulmonologist stated that he had moderate sleep apnea, the ENT is saying that it is severe, and that the study probably doesn't show how bad it really is. In the hours that he was having the sleep study, there were 69 attempts of breathing that were unsuccessful due to obstruction! He said that there were on average 7-10 obstructive events an hour! So he wants to quickly move forward with having the tonsils/adenoids removed. He explained how his oxygen levels were low and his CO2 levels were high and how this can effect his heart and brain, and decrease his drive to breath! Scary stuff! He also noticed fluid in Sam's ears (there is ALWAYS fluid) and wants to place tubes as well if there is fluid when they do the surgery. Due to Sam's bleeding disorder and the risk of bleeding being so great, he will be admitted to the ICU for at least one night after the surgery, and then they will determine how long we stay depending on how he does. We should hear by monday. I am praying that it is like the day after Christmas or something, so that we can get this resolved before he gets another respiratory illness.
We also got to go to our church to decorate cookies and watch a Muppet Christmas Carol. The kids had a blast decorating cookies, but Sophia especially was not impressed with the movie. She liked it for about five minutes and then wanted to play. Oh well it was so fun:-)

IVIG

Sam and I went back into Children's on tuesday for his IVIG. We were hoping to be in the brand new unit but it is still not open. We were in a completely different area then normal, and it kind of threw him off, but we had our favorite nurse and of course Khadeisha who we just are truly blessed by. They had a tough time getting his IV again today:-( Not quite sure why, I wish I could figure it out. This time and last time, the nurse was in the vein and had a good blood return, but both times it then didnt work. In both cases the nurses were unsure of what the problem was. THe older he gets, the sadder he gets at the IV start. I had someone suggest a port, and I have thought about it in the past so much. I am just not sure if this is the right thing for us. We have several appointments coming up in the next several weeks, and so I am hoping to kind of figure out what the long term goal with the IVIG is, if we are going to trial him off again at some point, or if there isn't a thought of that due to all of the other stuff going on, or if there is certain criteria that has to be reached before we get to that point. We shall see...
He played the game Operation while we were there. He absolutely loved this game! He played it the majority of the time we were there, and then cried when we were leaving. Silly kid:-)