In March 2002, Jason and I decided to try for another baby. Joshua was 15 months old, and we wanted them to be closer in age. In July, we found out I was pregnant, and even though my pregnancy was completely different, I knew really early on (like by the end of July) that it was another boy. Jason said "Well, I am still going to buy baby girl clothes." I told him that he was going to be disappointed if he thinks this boy is a girl, and that we are not dressing our BOY in dresses. October 31, we found out that we were indeed having another boy. My pregnancy was pretty uneventful...no sickness or swelling or any other issues. We decided to name him Zachary Joie. My maternal grandfather's name was Joie Bruce, and we wanted to honor him . He ended up passing away when Zachary was about 19 months old, but he did know that he had a great grandson named after him.
Zachary was due March 20 and was born March 18. He had no complications aside from a little jaundice, nursed right away like a champ, and started growing like crazy. By April, I began to notice that when the weather was nice and we had the house opened up, he would sneeze and get all stuffy. When we would close it back up, he would be okay. In June, we went to Colorado for vacation. He was having trouble breathing and just sounded awful. I called the pediatrician who started him on an antibiotic and prednisone based on his symptoms. We continued to fight this battle, and he spent much of his first year on breathing treatments, prednisone, and an antibiotic. A few days after his first birthday, Zachary ended up really sick and we were at the urgent care at our Children's Hospital. He tested positive for RSV and also had pneumonia. He was able to keep his oxygen stats up enough that he didn't end up on oxygen (they were around 90), but he was suctioned out (They would stick a tube down his nose into his chest to get mucous out) by respiratory therapy every 3-4 hours. When we got out of the hospital, we had an appointment with the pediatrician. I asked about putting him on Singulair since I suspected he also had allergies and it was supposed to help asthma and allergies, and the doctor agreed. It was like a miracle drug for him! He rarely struggled after that.
We ended up having to change pediatricians that summer, and the new one kept him on Singulair. In the very end of December 2004, he started struggling again. We had 2 more urgent care visits. He kept getting worse and worse. In early January, 2 months before he turned 2, he was hospitalized with RSV and pneumonia again. This time, he ended up on oxygen, and spent 5 days in the hospital. At our followup afterwards, the pediatrician told me that when the urgent care doc at Children's called to admit him, she told him "we don't admit 2 year olds for RSV." He told her "we are admitting this one! He is in bad shape."
In May 2005, we found out our oldest has celiac disease. I had them test Zachary as well, and his also came back positive. We were glad to know the reason he never had a solid stool in his life up until that point.
Zachary has had multiple cases on pneumonia, sometimes 3-4 a year, sometimes only one a year. Last spring (2013), he got pneumonia so badly that he missed almost a month of school, ran fevers of 103-104 for 17 days, and his entire lung was "whited out" on the xray because it was full of pneumonia. It took 6 different rounds of antibiotics, and 15 ER and doctor visits to get it cleared up. He should have been admitted, but unfortunately, the only doctor listening to me was the allergy/immunology doc, and she didn't have rights to admit him.
In May 2013, we started him on allergy shots (he gets 2 each time because of the number of items he is reacting to) because he has so many allergies! He was taking zyrtec twice a day, Benadryl on top of that, nose sprays, eye drops, and was still miserable 9 or 10 months out of the year. By July 2013, he did not need an allergy pill at all, except on shot days to help prevent an anaphylactic reaction. He is now getting shots every 3 weeks, and in November will move to every 4. He is on a 5-year shot plan.
In November 2013, Zachary got his blood drawn to see if he has the same immune deficiency as his sisters. We were not surprised to find out his bloodwork looked similar. Within normal range of IGG, but on the lower end. And many very low strep-pneumo titers (these indicate that he is more susceptible to pneumonia, sinus infections, etc). In December, we gave him an extra pneumovax vaccine. We redrew his bloodwork in March, and found out that all of his numbers improved significantly. Then the following week, we ended up in the ER because he had double pneumonia. It took 3 or 4 rounds of antibiotics and several weeks again to get over it.
Between May and mid-July, he was well. Mid July, his nose started running and he started coughing again, in spite of all of his meds. We ended up at the doctor the end of July, and he had the start of an ear infection plus other crud. He ended up on clindamycin, another inhaler, and we were just trying to keep things from getting worse. The doctor (actually we see a nurse practitioner who we absolutely ADORE) told me that I really should think about doing the infusions with Zachary as well, especially since we can see how huge of a difference it has made with the girls. I told her to ask him what he wants to do. He is 11 and can make decisions. He said that he wants to try it because it has made the girls feel so much better.
The doctor started the process last Tuesday, and by Friday we found out the insurance company approved it. (It is often a 6 week process that involves an appeal.) We will get his first shipment tomorrow, and are still waiting to hear when the nurse will come out to watch him during his first infusion (to make sure he reacts okay to it). I am a little concerned with how crazy his soccer schedule is, and how sore Sarah was, especially in the beginning, to see how this will work out. Since he plays goalie, he cannot exactly take it easy. We may have to play with the day to give him the maximum time between the infusion and his next practice/game time, but we will see.
The first 3 weeks, Zachary will be receiving 5 grams every week. After those 3 weeks, he will go to 10 grams every other week. Right now, Sarah (who weighs 5 pounds less than him) receives 12 grams every other week (she started at 6, but was still getting sick, so we had to keep upping the dose until we got to where she wasn't getting sick anymore). His immune system is better than Sarah's (we think), though. The immunologist thinks that he may only be on this for a year or two and then will be okay on his own. But she did also say that she thinks if we drew his blood and tested, that it would come out that he has had mono at some point as well.
Zachary will begin middle school this year. He is starting his 3rd year playing the violin, and also his 3rd year playing competitive soccer. He plays goalie for his team, and has since 2nd grade. He has had a couple of pretty serious injuries doing so (breaking his hand in 2nd grade and tearing his Achilles tendon in 4th grade), loves it. He is also thinking about doing robotics this year, and may sing in choir at church (he did last year). He has an amazing core group of friends and loves spending time with them. He has a heart of gold, and puts himself into whatever he does 110%.
I cannot wait to see how good he feels on the immunoglobulin therapy! I am praying it will make as much of a difference for him as it does for the girls! I would love to get him off the asthma meds, and not have him on prednisone all of the time! We appreciate your prayers.
