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:-)

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

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.....

More stress....

I am trying to remain positive lately but sometimes I just get so overwhelmed. There is so much STUFF going on right now. And I feel like I am sinking underneath it all. Please just pray for our family, for HUGE decisions that have to be made, for Sam's health and decisions that need to be made regarding him, for my back/job situation, and that I have the wisdom/strength to make the right decisions.
Sam has been "a little off all weekend" with intermittent low grade temps, fussy, and sleeping a lot more than normal. Now this totally could be nothing but it could also could be him getting sick, just never know with Sam. I finally heard back from pulmonology yesterday. I had been hoping that since he had wanted to see him in six weeks after "the urgent sleep study" that we wouldn't have to see him until january, because that is when the "urgent sleep study" is. So that gives us appt's next month in Coord. Care Clinic, with GI, immunology, ENT, pulmonology, his primary, and IVIG x2. It's going to be hectic with the holidays.
We went out to eat on saturday with some friends of ours. It was so fun! The kids behaved really well, and the food was fabulous:-) On sunday we had family portraits taken by a fabulous photographer, I can't wait to show them to you. She also did some of just Sammy too. I think they are going to be amazing.:-)
God spoke to me so clearly on sunday at church. Our Pastor preached about miracles, and being faithful and continuing to trust God with all your needs. A big part of the sermon was about "The Widows olive oil" in 2 Kings 2:4. Here this woman had nothing and creditors were coming to take her children as slaves to repay a debt. She cried out for help, and God heard her prayer. He provided enough oil for her to pay her debt and to live off of.
Our Pastor said "the miracle is in the house." I am believing for that miracle in my house and in my life. I know God is able to do exceedingly abundantly above all expectations and I am eagerly awaiting His answer to my prayers.