So, all of last week, I was trying not to dwell on the fact that we were rapidly approaching the infamous 13-day mark. Seriously, people, this child has not been without an infection more than 13 days in months!! Saturday was day 11 and Noah seemed to be unraveling before my very eyes. He was super cranky, demanding, irritable and running a low grade temp. I began to brace myself for what I thought was coming. Sunday, he still had a low grade temp and was pretty irritable but did better. Monday **the actual day** he was FINE!!! Yes, let me say that again....FINE!!!! When I stopped and thought about it, I literally thought, "Wait.....what just happened????" I am so thankful that he's doing so well!!! It would be wonderful if these illnesses became minor blips on the radar rather than the life-altering, miserable infections they have been.
While I am not yet willing to let myself think we're out of the woods, it feels really good to experience a good change! We have a little over a week before we will go back to the lab to have levels re-checked and that will give us critical information. In the meantime, I am still carefully weighing some options of alternative treatment for him. Still praying through all that.
So, YAY for some progress! Keep it up, little man!!!
Tuesday, March 22, 2011
Sunday, March 20, 2011
My therapy
My parents have been here for the past week and I was able to take a couple days off work while they were here. My mom and I had lunch together, just the two of us, three times this week and spent lots of time shopping for house stuff, picking out curtains and blinds and just hanging out in general. We've had some fun family outings and gotten to enjoy game nights with the boys and movies. The icing on the cake has been that Noah has been well for almost 2 weeks now and has been sleeping all night. The combination of sleep, almost a full week off work, family time and plenty of opportunities to process and share my heart with my mom and dad has truly been therapeutic. I feel like I'm rested for the first time in about 6 months. It's been heavenly. Really.
Since my parents leave tomorrow morning, it will be back to mostly regular life around here. We have 3 more weeks of different sets of out-of-town relatives here to visit. This round is my sister-in-law and niece. It will be fun to spend some time with them and ease back into work. Although Noah seems to be sliding downhill with a low grade temp and increased irritability, I am hoping that maybe this go-round won't be so bad and that we will still sleep.
Tuesday, Noah and I have an appointment with yet another specialist to explore one new option that might help him. We would appreciate any and all prayers as we explore a potentially beneficial, yet very difficult possibility of help for him. I will share the details of what we're going to try after our appointment. In the meantime, we have two more weeks before we go back to Childrens for more lab work and doctor appointments. At that point, we will see if Noah's body was able to mount some immunity to strep after his vaccine and if it helped him start producing more IgG cells.
I'm gonna spend the next few hours soaking up a little more "therapy" time and enjoy the rest and relaxation while it lasts!
Since my parents leave tomorrow morning, it will be back to mostly regular life around here. We have 3 more weeks of different sets of out-of-town relatives here to visit. This round is my sister-in-law and niece. It will be fun to spend some time with them and ease back into work. Although Noah seems to be sliding downhill with a low grade temp and increased irritability, I am hoping that maybe this go-round won't be so bad and that we will still sleep.
Tuesday, Noah and I have an appointment with yet another specialist to explore one new option that might help him. We would appreciate any and all prayers as we explore a potentially beneficial, yet very difficult possibility of help for him. I will share the details of what we're going to try after our appointment. In the meantime, we have two more weeks before we go back to Childrens for more lab work and doctor appointments. At that point, we will see if Noah's body was able to mount some immunity to strep after his vaccine and if it helped him start producing more IgG cells.
I'm gonna spend the next few hours soaking up a little more "therapy" time and enjoy the rest and relaxation while it lasts!
Friday, March 11, 2011
Julie and change
These two words really should not go in a sentence together. Period. Except maybe if separated by a "hates". It's always fascinated me that my sister and I, who are very close in age, grew up in the same family, and experienced the same moves have turned out so very different in this area. She loves change. She loves packing, moving and all the stuff that goes along with it. I, however, unequivocally HATE change. Even good change. It messes with my head and wreaks havoc on my heart. It is something that I have really had to work on dealing with in a better way since being mom. Being a mother to little boys (probably kids in general) forces me to deal with change on a regular basis. Having a healthy child forced me to deal with change and now that I have a child with a serious medical condition, it's forcing me to deal with change on a whole different level.
But, in the midst of all the struggles and heartache over our little guy the past few months, we have a major GOOD change coming up: we are finally moving out of our very small, first "home" we never intended to stay more than a couple years in!!! I am so excited about finally have some space to breathe and a lot more fun stuff for the boys to do but at the same time, the idea of packing and moving kinda makes me want to barf! This evening, I decided to pack up all my living room decorations since I needed to do a thorough dusting anyway, I figured I might as well pack all this stuff now rather than dusting it again in a couple weeks when we move. It made me anxious. I started to feel all sappy about packing stuff and seeing bare spaces. Crazy, eh? This is a GOOD CHANGE!!!!! And I'm anxious about it! But, I am so thankful for the blessing of this new home and can already envision my sweet little boys running around and loving it. That's what I'm having to focus on. Well, that and suppressing the major panic attack I feel like constantly lurks these days.
But, in the midst of all the struggles and heartache over our little guy the past few months, we have a major GOOD change coming up: we are finally moving out of our very small, first "home" we never intended to stay more than a couple years in!!! I am so excited about finally have some space to breathe and a lot more fun stuff for the boys to do but at the same time, the idea of packing and moving kinda makes me want to barf! This evening, I decided to pack up all my living room decorations since I needed to do a thorough dusting anyway, I figured I might as well pack all this stuff now rather than dusting it again in a couple weeks when we move. It made me anxious. I started to feel all sappy about packing stuff and seeing bare spaces. Crazy, eh? This is a GOOD CHANGE!!!!! And I'm anxious about it! But, I am so thankful for the blessing of this new home and can already envision my sweet little boys running around and loving it. That's what I'm having to focus on. Well, that and suppressing the major panic attack I feel like constantly lurks these days.
"Be anxious for nothing, but in everything, with prayer and petition, present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and minds in Christ Jesus." Phil 4: 4-7.
Prayer and God's grace will get me through. Not only the move, but our long journey ahead with Noah. I'm so thankful for His grace and His plan for my life. It's a really, really good thing that it's not up to this crazy, feisty red-head!!
Sunday, March 6, 2011
Games and fun with boys
I wanted to write a post about some of the fun parts of being a mom of boys again! Too much focus on the woes recently....so here goes.
It amazes me how much fun my boys can have with a set of wood blocks. This afternoon they spent a good hour playing with these blocks. At first, Caleb was getting really irritated with his brother because Noah is in the "stack a few then KNOCK them all over" and Caleb is more into the stacking them impossibly high phase. Caleb actually got sent to his room for a bit because he was not playing kindly with his brother. A little while later, he came out and said he wanted to play and have fun with his brother. So, he made a game out of stacking blocks for Noah to knock over. It was PRICELESS to watch this. Caleb would stack them and then say, "Go buddy! You can do it!", Noah would knock it over and then they would both cheer. They did this over and over and had so much fun! I was soaking it all in. I was so proud of Caleb for setting aside what he wanted to do and coming up with a game that would be fun for both of them. He was really proud of himself too! "See what a great job I'm doing playing with my brother?" he asked. So cute. I absolutely love catching these peaceful glimpses of my boys playing together. They already fight and I know that there will be much more of that to come, so I really want to soak up these fun, peaceful moments with them!
One of the highlights this weekend was teaching Caleb how to play one of my childhood favorite games...Sorry. It's a pretty simple board game and is one I remember playing with my parents and sister a lot growing up. It had been a long time since I tried to teach Caleb a board game so I wasn't sure what he would think. But, he loved it! It's pretty funny watching him try to figure out how to turn it into an action game by flying the pieces to their new spots and crashing into pieces in his way. The best part was that he asked to play it again the next day!
I love starting to build our little family memories and including some of the highlights from my childhood. I can only pray that our family will be as close-knit and healthy as mine was growing up!
It amazes me how much fun my boys can have with a set of wood blocks. This afternoon they spent a good hour playing with these blocks. At first, Caleb was getting really irritated with his brother because Noah is in the "stack a few then KNOCK them all over" and Caleb is more into the stacking them impossibly high phase. Caleb actually got sent to his room for a bit because he was not playing kindly with his brother. A little while later, he came out and said he wanted to play and have fun with his brother. So, he made a game out of stacking blocks for Noah to knock over. It was PRICELESS to watch this. Caleb would stack them and then say, "Go buddy! You can do it!", Noah would knock it over and then they would both cheer. They did this over and over and had so much fun! I was soaking it all in. I was so proud of Caleb for setting aside what he wanted to do and coming up with a game that would be fun for both of them. He was really proud of himself too! "See what a great job I'm doing playing with my brother?" he asked. So cute. I absolutely love catching these peaceful glimpses of my boys playing together. They already fight and I know that there will be much more of that to come, so I really want to soak up these fun, peaceful moments with them!
One of the highlights this weekend was teaching Caleb how to play one of my childhood favorite games...Sorry. It's a pretty simple board game and is one I remember playing with my parents and sister a lot growing up. It had been a long time since I tried to teach Caleb a board game so I wasn't sure what he would think. But, he loved it! It's pretty funny watching him try to figure out how to turn it into an action game by flying the pieces to their new spots and crashing into pieces in his way. The best part was that he asked to play it again the next day!
I love starting to build our little family memories and including some of the highlights from my childhood. I can only pray that our family will be as close-knit and healthy as mine was growing up!
Processing
It's been a couple days since we got our latest batch of news. My mind has been going pretty much non-stop since then. On Thursday afternoon at our allergist appointment, the doctor made a statement about Noah's new bilateral ear infections that really rattled me. He said, "Well, in my opinion, it is not worth the risk of leaving an ear infection untreated in an immunosuppressed child." That word stopped me cold. It had not really sunk in until then that this is our new reality. I've always thought of children who are immunosuppressed as having cancer, been extremely premature or having had a transplant or something MAJOR like that! It had never occurred to me that it could happen to my child. Although we have already been living with this condition for months now, it just felt a lot more real and scary to have a name.
Needless to say, many things have been swirling through my head. How are we going to keep him healthy? How do we make sure he's not exposed to strep? How do we keep him infection-free without daily antibiotics which only create all kinds of other problems for him. One of the conclusions three doctors have now come to is that all the GI issues (primarily a recurrent candida infection) Noah's been having is because of the antibiotics he's been on. This is actually an issue I am still not 100% convinced is only related to antibiotic use. There are several other things that could be factors that need to be explored. Good thing I'm not afraid to ask questions and follow my gut (no pun intended)!
One of the many things that has been very comforting to me over the past few days is that, looking back at Caleb as a young toddler, he struggled with chronic infections as well. I believe he is one of the kids that, according to the immunologist, slipped through the cracks and was never diagnosed. I haven't found out for sure yet if there's a way to actually test to see if he had and IgG deficiency as some point or not but it sure would be interesting to know. There are, though, some major differences between the two that make things a little worse for Noah. Caleb would get sick about every 4-5 weeks whereas Noah has not gone more than 13 days in the past 9 months without getting sick. The immunologist was careful to point out that this is NOT a normal pattern of illness in a child and should not be happening. In a weird sort of way, it's a relief to know that I'm not crazy and we're not doing anything wrong: our child should NOT be sick this often.
We are choosing now to focus on the fact that we have HOPE. There is HOPE that Noah's immune system is simply getting off to a slow start and that in a couple years he will be fine. There is HOPE that the vaccination he got on Thursday will protect his little body from a deadly infection. And, the most important HOPE of all is that we have a Savior who loves our little boy more than we can imagine and already has this all figured out.
Needless to say, many things have been swirling through my head. How are we going to keep him healthy? How do we make sure he's not exposed to strep? How do we keep him infection-free without daily antibiotics which only create all kinds of other problems for him. One of the conclusions three doctors have now come to is that all the GI issues (primarily a recurrent candida infection) Noah's been having is because of the antibiotics he's been on. This is actually an issue I am still not 100% convinced is only related to antibiotic use. There are several other things that could be factors that need to be explored. Good thing I'm not afraid to ask questions and follow my gut (no pun intended)!
One of the many things that has been very comforting to me over the past few days is that, looking back at Caleb as a young toddler, he struggled with chronic infections as well. I believe he is one of the kids that, according to the immunologist, slipped through the cracks and was never diagnosed. I haven't found out for sure yet if there's a way to actually test to see if he had and IgG deficiency as some point or not but it sure would be interesting to know. There are, though, some major differences between the two that make things a little worse for Noah. Caleb would get sick about every 4-5 weeks whereas Noah has not gone more than 13 days in the past 9 months without getting sick. The immunologist was careful to point out that this is NOT a normal pattern of illness in a child and should not be happening. In a weird sort of way, it's a relief to know that I'm not crazy and we're not doing anything wrong: our child should NOT be sick this often.
We are choosing now to focus on the fact that we have HOPE. There is HOPE that Noah's immune system is simply getting off to a slow start and that in a couple years he will be fine. There is HOPE that the vaccination he got on Thursday will protect his little body from a deadly infection. And, the most important HOPE of all is that we have a Savior who loves our little boy more than we can imagine and already has this all figured out.
Thursday, March 3, 2011
Good news, bad news and scary news
It's been a long, long day, so this will be short but I know there are many of you who have been thinking about us and praying for us today, so I wanted to give you all at least a little update.
Brief-ish synopsis of visit with immunologist: Noah does indeed have an immune system deficiency, called "hypoimmunoglobulonemia-G of infancy". Basically, for unknown reasons, his immune system has not been producing enough IgG since the cells I gave him during pregnancy and a year of breastfeeding started dying off. Thus, the constant cycle of illness. Good news: he *may* outgrow this. Bad news: it is going to be exceedingly difficult to keep him healthy until he does or it may be a life long battle for him (not letting my head go there yet). Scary news: his body does not protect itself AT ALL specifically against the 11 strains of strep. A strep infection could be fatal. Hearing that was kinda like getting punched in the gut. Why strep and not other things? No clue. How do we keep him alive? He was given a brand new vaccine (I'll post the details on this another time) with all 11 strains in it (dead strains, since a live vaccine would literally kill him) and we now pray that it will rev his immune system into gear. We go back for repeat blood work in one month and see Dr. Wright again in 2 months.
Noah was also evaluated by an allergist today who summed it up by saying, "You definitely have an allergic kid here". Great, thanks. He's also concerned that he may not be hearing properly and that his speech is delayed. More issues to deal with another day.
I'll update again this weekend when we've had a bit more time to process all of this and my thoughts start to make sense again. Thank you all so much for praying for us and please, please, keep praying now more than ever.
Brief-ish synopsis of visit with immunologist: Noah does indeed have an immune system deficiency, called "hypoimmunoglobulonemia-G of infancy". Basically, for unknown reasons, his immune system has not been producing enough IgG since the cells I gave him during pregnancy and a year of breastfeeding started dying off. Thus, the constant cycle of illness. Good news: he *may* outgrow this. Bad news: it is going to be exceedingly difficult to keep him healthy until he does or it may be a life long battle for him (not letting my head go there yet). Scary news: his body does not protect itself AT ALL specifically against the 11 strains of strep. A strep infection could be fatal. Hearing that was kinda like getting punched in the gut. Why strep and not other things? No clue. How do we keep him alive? He was given a brand new vaccine (I'll post the details on this another time) with all 11 strains in it (dead strains, since a live vaccine would literally kill him) and we now pray that it will rev his immune system into gear. We go back for repeat blood work in one month and see Dr. Wright again in 2 months.
Noah was also evaluated by an allergist today who summed it up by saying, "You definitely have an allergic kid here". Great, thanks. He's also concerned that he may not be hearing properly and that his speech is delayed. More issues to deal with another day.
I'll update again this weekend when we've had a bit more time to process all of this and my thoughts start to make sense again. Thank you all so much for praying for us and please, please, keep praying now more than ever.
Tuesday, March 1, 2011
I'm tired
I guess if this blog is kind of like a journal, it's ok to be real even on a bad day, right? I'm so tired today. I woke up with a raging cold in addition to Noah being really sick again. Honestly, I'm having one of those "feeling sorry for myself" kind of days. I'm so tired, I hurt. I'm struggling with a baby boy who is just miserable. It's not fair. I want him to be well. I want to be well. I want to be able to focus on the exciting things going on in life right now and not be so weighed down by the struggles. I think I just need some grace today.
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