Sam is sick:-(

His doctor made a comment about a week ago about how long it had been since he had had an upper respiratory infection (the beginning of january), and we were just so thrilled that he has been doing so well. He had his IVIG last week so even though he was starting to be sniffley I was praying that the IVIG would fight it off. But it would appear that it hasn't. We've got a very congested little guy on our hands. The mucous is thick and green but I am praying we can get by without antibiotics.
Looking forward to a sunday of praise:-)

Psalm 136:2 Give thanks to the God of gods. His love endures forever

Sammy is sick:-(

Sammy seems to be getting sicker. He had such a bad coughing spell this evening (about two hours after albuterol) that he actually vomited and was choking. The poor little guy was struggling to breathe. I am meeting his doctor first thing in the morning, but am praying that nothing happens during the night that causes us to need to go to the ER.
They may postpone the surgery! Would you please join me in prayer that they will continue with the surgery? That Sam will quickly get healthy and that they can proceed as planned? It has been very stressful getting all the plans in place as far as a place for Sam and I to stay after he is discharged from the hospital but still needs to be cloes by, and childcare for Sophia, and working my doctors appointments into the mix. I am just wanting this whole process to be completely behind us. Not to mention that the tonsils are probably what is causing all of the sinus infections and respiratory symptoms. So we are really probably going to be sick until they are out.
So I am just praying that they can come out next week, and then we can start the recovery process....AND trasition AWAY from the apnea monitor!!!:-)

Psalm 91:14-16
14. God says, I will save those who love me and I will protect those who acknowledge me as Lord.
15. When they call to me, I will answer them; when they are in trouble, I will be with them, I will rescue them and honor them.
16. I will reward them with long life; and I will save them.

:-(

It has truly been a rough week. Last weekend my mom went down to virginia as my grandmother was doing poorly. They thought that she would do ok for a while longer, but my mom wanted to be there anyway. As this past week progressed we all realized thIt at her days left before meeting her Maker were few. So we started to try to work out a trip to see her. And I am so so thankful that we did. Sammy and I drove down to virginia through the night on thursday, we arrived at 5am on friday morning. We quickly went right up to bed and slept until 9am. When we woke up we went in to see grammie, it was so hard to see her so week and struggling.
But as we went in to her, and spoke with her she smiled and said our name. Sammy was so sweet, he said "GRammie I am trying to kiss your head but I can't reach." God orchestrated this whole thing that we could all get there. I feel so blessed to have gotten to see her. We arrived very shortly before she died. Sammy brought everything into perspective after she had died when he said "Now Grammie can go for walks with Jesus." It is amazing the knowledge and faith that this little boy of mine has. I am so thankful that he knows who God is and God's love for him. Please pray as we have people traveling from around the world for the funeral this week.
Also please pray for Sammy. It has been quite the rough week with him. Towards the beginnning of last week he started running some intermittent low grade fevers, and had the gasping and struggling to breath episodes. He was extremely congested, and the doctor prescribed an allergy med to attempt to help instead of antibiotics. But unfortunately they didn't seem to help, so we have now switched over to the antibiotics. And now yesterday (during our ride home) he has begun to experience bloody stools again. Praying that the sinus infection as well as the bloody stools resolves

Frustrated and Angry

Uggh so annoyed. Yesterday we went to see our PCP, after waiting two days to hear back from the GI doctor, regarding Sam's watery stools and refusal to eat. Those are his symptoms, explosive watery stools, belly pain, and he won't eat. You know what the doctor said to me after I waited until yesterday for him to return my call? He said "you should take him to see his primary care doctor maybe he has strep throat!" Are you kidding? Where does diarrhea cause a sore strep throat?!?!
So anyways we went in and saw Dr V yesterday. Sam's weight was down six pounds on her scale since december. I knew that he was losing weight but I had no idea how bad it was. He looked ok to Dr V. She said he was "fairly hydrated", and that I needed to continue to push fluids. He did have some swollen lymph nodes so we know that there is definitely an illness going on, but she wasn't able to find anything, ears throat, sinus' etc. So now we are just praying that he will get better, this diarrhea will go away, and that he will start eating again.
We are also trying to get a second opion through Mass General Coordinated Care clinic, which apparently is a whole group of specialists who meet together as a team to determine your care. So if you see GI, hematology, immunology, and endocrinology like Sam, those four specialists would have meetings to discuss your child and determine what the best plan was. And then when you go into appointments they are all there, so you don't have several separate appointments. So we are hoping to get in there very soon. Please pray that God opens the doors for this to happen. For now enjoy this super old pic of my handsome boy. I just haven't taken any recent this week, and I am just plain old worn out. This week has really been tough for me, and I have been struggling with feeling alone. But isn't he just gorgeous?

A new week

So here we are in this new week.... praying that Sam can stay healthy until thursday when he gets his IVIG. It seems so crazy that the last few months he has been definitely not feeling as well and it seems like he has been sick immediately before he is due for treatment. He slept 14hrs last night and is dragging this morning but praying that this doesn't mean anything. He is cool, but not cold so that is a plus. I am fairly certain that he has another sinus infection but we don't want to treat it since the antibiotic may cause the bleeding in his belly again. So we just continue for now and see what happens...
In wonderful news Matt's cousin Andrew does not have a tumor!!! His CT Was negative. They are still investigating what is going on but at least it is not a brain tumor.
We are awaiting ANOTHER snow storm, and I am just sick of the cold, can't wait for the warm weather. I think it will be better for Sam to not have to be workign so hard to keep himself warm. Not to mention we can get OUTSIDE and they can run and play and not destroy the house:-)

Sick babies

These are some pics of my cute kids the other day. Sam was protecting her while she slept, he is such a sweet boy. They both are just feeling so sick:-(

Has the lack of IVIG caught up with us?

Oh my! Sammy is running a high temp and is lethargic today. He isn't eating and has been clingy. He seems to have some cold symptoms which he has had for almost a week, but the nasal drainage is still clear so I don't believe that he has a sinus infection or anything like that. His lungs sound questionable, maybe he has developed bronchitis or pneumonia or something. We have had to use the albuterol and that seems to help but I guess this will start being our true test. WE are almost two months out since the last IVIG, and although we have been feeling under the weather for a couple of weeks off and on there has been nothing major. I wonder what this will turn out to be? Sophia also continues to be sick and has a terrible cough and nasal congestion. But she doesn't have a fever. I guess we shall see.

Sickness and the same old worries....

Hmm where to begin. Tonight as I rocked each of my children to bed, I looked into their faces and listened to their congested coughs and labored breathing I felt those same feelings of guilt and fear that I felt when Sam was an infant and struggling to keep him healthy without really knowing what was wrong. I know colds are no big deal in the grand scheme of things, but for my kids it always seems as though the "no big deals" turn into more than we bargained for. I often find myself wondering if I could have done more during my pregnancies to keep them healthy and make them full term. If I could have prevented them from getting ill.
For most a cold doesn't last a long time, but saturday will make two full weeks since Sophia's first symptoms started, and we aren't yet getting better. She is more congested and I can actual hear crap in her lungs. Her respiratory rate has increased and she is plain old miserable.
And Sam, we had just been starting to feel as though maybe his immune system was working optimally. He was exposed to Sophia and didn't get sick! It was so exciting last week to see him continue to be healthy. But this week he is sick, and although his respiratory symptoms are not very bad, I am anxious about it, about what it may be, what it may turn into.
And when do these fears subside? Is his immune deficiency always going to scare us? Are we always going to be waiting for the other shoe to drop?
I know that God is in control of all of this. I know that He is supreme over all of this. I know that His Plan for my kids and for our lives is perfect. I know that HE IS ALL AND KNOWS ALL. But tonight I am just struggling with all of it. Many of you know the struggles that I had during my pregnancies. That both of my children are miracles, and that Sam was written off in the beginning and here he is. I know that God carried us through, I know that He will continue to, but today I am just struggling.
Look at these old pics:-)
Sophia Grace

Samuel Lee

Modified barium swallow

Well Sophia's barium swallow is scheduled for next tuesday. I am praying that all goes well. It would be nice if this test would tell us why she won't eat. But is that like praying for something to be wrong? I don't know. She is now chewing the food and then spitting it out. I just want her to eat like a normal child and start growing. It is crazy to have her in 6/9month clothes when she is almost fourteen months old. I have all these beautiful clothes that people have given me (thanks Kerry, Tracy and Denise) and she needs to GROW to wear them.
She is stooling a ton, like 5-6 times a day and it is watery and green. I called her GI doctor today as I feel like it is her new med, or the pediasure. And the only thing he said was that he thinks it is gastroenteritis and to take her to the pediatrician. Uuuggghhh!!! Annoying, I try not to be, but it is hard. So I guess tomorrow we will be going to see her primary.
Sam is still feeling a little funky. I can't quite put my finger on it, but is fussy and sleeping extra, and eating horribly. He has continued to complain that he is so sick. He had a temp yesterday to 100.7, which is no big deal in other kids, but who knows what it means with Sam. Please pray for him.

Denied!!!

Unfortunately we found out today that they would not cover the pediasure for Sophia. Her GI doctor is appealing it but it doesn't look too promising. I know God can provide this need, so please pray that He does. We have the swallowing specialist coming in the morning. I am looking forward to seeing if there is something there that could be instigating this whole failure to thrive thing. We also have a weight check tomorrow. I am praying that we have hit 18lbs again.
Sam continues to complain intermittently about not feeling well. I feel like as the days go on and we get farther out from the last IVIG that I am getting more anxious each day. I feel like we are just waiting for something to hit the fan. And now with this whole crazy swine flu I am really anxious about it. I know that God is in control but I am struggling to rely fully on Him right now.

SICK (Edited)

UPDATE: Sam is now running a fever and acting ill, not usually a complainer but now he is a little fussy. Looks like we will be taking a trip to the doc tomorrow. I am just anxious because next tuesday a week from today is supposed to be the last IVIG for Sam. If this illness turns into anything then they probably won't stop the treatment. And his immunologist said he would hold off another YEAR if we don't do it now. It is scary as Sam has done so amazingly well with the IVIG, he has only been on antibiotics once in the last year and a half. He often still has fevers, rashes, GI upset etc, but not all together. The fevers are usually non-related to any other symptom. This sickness has fever, cough, lethargy, fussiness, etc. Please pray for my little guy. That the right decision will be made about the IVIG and that I can handle whatever that decision is.




We are surviving here on the homefront. Sophia is no longer running a fever, but is now instead having long harsh bouts of coughing which has led to vomiting. Sam is also having these couging epidodes
Our house is starting to show more frequently (3x in the last week) so please pray that we can sell and move on.