Show us your life

Over at www.kellyskornerblog.com, Kelly started a ministry, encouragment link. So if you are over from Kelly's blog, welcome. I hope that here you will find some solace in knowing that you are not alone. That if you are caring for a chronically ill child that you know that God is walking right beside you. That there can be joy in the trial and that HIS JOY COMES IN THE MORNING!!!
This is our story (the brief version8) After a complication filled pregnancy Samuel was born emergently at 35wks gestation and was IUGR (intrauterine growth restrition) and SGA (small for gestation age) He spent some time in the NICU, but then came home. And then for the rest of this year he was constantly ill and ended up being hospitalized multiple times. At 13months he was diagnosed with Hypogammaglobinemia (IgG-1 and IgG-2 deficient) essential this means that his immune system doesn't work. So we now get transfusions ever 3wks. In the last two years we are dealing with new problems, bleeding issues- bloody stools, bloody noses, and abnormal platelets. And more recently problems keeping his temperature normal, and some possible high blood pressure. But through it all, he is such an amazing little boy and I am so blessed to be his mom. Join us on our journey, follow Sammy's story to see what God has in store for him, and please let us know you are here:-)

OUR LAST TRANSFUSION!!!!

We made cupcakes for all the staff. Sammy picked the kind of sprinkles and had a blast decorating them. He could not wait to give them to Khadeisha


Our nurse Katie who did a wonderful job getting the IV in and making him comfortable. She was so sweet each and every time we went there.


The Clowns, these guys and two other regular clowns, were sources of constant laughter for us. They were always HYSTERICAL


The new toys and balloons they got for us. They even got him a Thomas balloon and fire engine balloon as they knew he really liked those. We truly were blessed by these amazing women

Hanging out with Meme

Meme gave Sammy a ride on his IV pole! It was so funny

One of our two FAVORITE nurses!!! This is Kerry. She just started working there very closely to when we started going there and she took care of Sammy often. She always comes and visits even if she doesn't have him. We will miss you!!!


Yesterday was officially Sam's last treatment Lord willing!!!! I am thrilled beyond words, yet petrified at the same time. He actually has been fighting some respiratory thing for greater than two weeks, and it has not gotten any better. It will be scary to see how things go when he doesn't have the immunoglobulins working for him.
The staff at Children's Hospital were amazing as always! We are truly grateful for all of them. How else would my two and a half year old LOVE going to get his treatment. He runs down the hallway and says "I'm back!!!"
They got the IV in on one try which is always a tremendous blessing. They started his medicine and then Khadeisha the Child Life Specialist (basically her job is to keep the kids entertained) played with him. They got him this great new eighteen wheel truck full of Matchbox cars, and an easter basket. They also got Sophia a little farm animal set that sings and makes animal sounds, and also an easter basket. We have had such a wonderful experience with all of these ladies, I truly am going to miss them. They asked us to come and visit whenever we can. I am sure we will. We have several appointments coming up in the next several weeks.
It is such a blessing to have such great medical care for him and to have that medical care be given with such great compassion and love. These women were genuinely sad that we would no longer be coming there.
They gave me copies of his IgG levels, and were even able to tell me yesterdays before I left. Yesterday he was at 1038. The normal range is 400-1300, so this level was great. The plan now is to recheck his level every 2months or so. If the levels start to drop off, or he gets sick then they will restart the treatment. Please pray that we are done with this...
In other news Sophia has lost three ounces and STILL has an ear infection!! We have moved on to antibiotic number 3. She is now 16lb 12oz. We go back next week for our follow up. I am anxious about this. Ultimately with Sammy the whole reason we ended up with treatments was related to his poor reaction to antibiotics, getting the colitis and stuff. And ultimately that is when they started checking his levels. Now with Sophia she has been on four antibiotics since december and has been allergic to two of them...

Immunology update

Well Sam, Sophia and I went to Waltham today to see his immunologist. All in all the visit went well, he expressed some concern with that weird rash, the low grade temps and loose stools that Sam seems to be getting again. His plan is to check his IgG levels at this next transfusion (a trough level) to determine if his dose just needs to be increased, or if he needs to start getting transfused every 3 weeks. Obviously we are praying for a dose increase not an increase in frequency. So please pray that God gives the immunologist wisdom to make the right decision. WE got caught in torrential downpours and lighting on the way home. Thankfully Sam slept, although Miss Sophia was crying for a good part of the hour plus ride home!!! Makes for a long ride:)