Friday, January 9, 2015

6 Months Later

Y'all, really, 6 months since I posted?  That should be a punishable offense.  What can I say?  Life with 3 kids, a full time job, a homeschooling is busy.  Homeschooling?  Yes, we are there again.  We made the painstaking decision to put the kids in our home district this school year.  I began meeting with the special ed department back in May to be sure everything was in order by the time school started.  What a waste!  After almost having to get an advocate to jump on board I finally got a meeting scheduled with the special ed teacher, Anna's teacher, the nurse, and the principal.  I went into the meeting just knowing things weren't going to work out.  Much to my dismay Kenneth and I left there feeling hopeful.  We bought the school uniforms and got everything in order for the first day.  I pick Anna up on the first day and she tells me her day was OK but that she didn't get to eat in the lunchroom with the rest of the kids and that upset her.  I decided to give it a few days and see if things changed.  They didn't.  A week into the school year and I went up to the school.  I was told that this was being done for Anna's safety to ensure she didn't choke.  Apparently kids are less likely to choke when they are isolated (insert sarcasm).  I explained that if someone was with her 1:1 in a classroom to eat then someone could be with her 1:1 in the lunchroom to eat.  They compromised by letting her take a friend to be isolated with her.  Finally they moved her to the lunchroom after 2 weeks.  I was still irritated about that when I walker her to her class one morning to find a huge red sign posted outside her classroom door that stated "Child in this classroom has seizures, meds in nurses office."  OK, so my teacher friends have explained the necessity but I still don't see it.  First off, not every person who walks in the building needs to know.  Second, if a child has a seizure shouldn't getting the nurse be common practice?  Third, Anna wears a medic alert necklace.  Lastly, how about some communication?  Apparently the PE teacher wasn't even aware Anna had epilepsy until she saw Anna's necklace.  They could explain it away all they wanted but to me it was a poor way to cover up a lack of communication.  If a sign is so necessary then place a "code purple" sign outside the door and educate what code purple means.  How hard is that?  So I let that go and was willing to move forward.  The last straw was when I picked Anna up and she got in the car and began crying.  She was telling me how her teacher was rewarding the other kids with gummy bears for getting correct answers.  Anna didn't get any gummy bears because she couldn't remember the sounds the letters make.  I was lived.  It took us years to teach her the letters and they weren't 100% mastered and I had told the school over and over that she was behind.  Instead of trying to meet her where she was they thought it would encourage her to hold her accountable for information she couldn't possibly have known.  If it took 4 years to learn letters then I'm pretty sure the sounds will not be mastered in a matter of weeks.  Then I got to Carly's school to pick her up and she was in tears because some girls were throwing spit balls in her hair and stealing her school supplies and her food at lunch.  They couldn't stand that my sweet pretty little girl has it together.  That's when it happened.  I snapped and realized this was not best for the kids or our family.  I discussed it with Kenneth and we sat on it for a few days and kept the kids home from school.  The decision was made, we pulled them out.  We have been homeschooling since.  We are still working through different types of curriculum but we are getting there.  Eeeeek.  Enough about that.  I don't know if it's because she has been home or because the antibiotics are working or what but Anna has had only 1 cold and 1 UTI since beginning the prophylactic antibiotics.  She has been healthier the past 6 months than she has her whole life.  We have tried to be careful about not going around those we know are sick but I'm trying desperately not to instill a sense of germaphobia into her or the other kids.  She is still dangerously thin but continues to eat by mouth what she will and then is tube fed at night.  So far no aspiration issues.  I pray that all continues.  In other news, Carly decided to try out for the Nutcracker this year in the North Texas Festival Ballet.  She was chosen to be a Polichinelle (Big Buffoon).  She really enjoyed the role and the work that came with being in her first production aside from yearly recitals.  She has also recently joined 4H and is learning to sew and cook.  Her dyslexia makes reading a challenge.  She can do it and does plenty of it but really excels in things that involve the other parts of her brain.  I want her to learn about the things she enjoys because it fosters a love of learning instead of the hatred she was developing in public school.  Gabe. He's Gabe.  He's strong willed and cute as ever.  His imagination never ceases to amaze me and tonight he learned how to  microwave mini pancakes all by himself.  Not too shabby for a 3 year old. Wow, I'm sure a billion other things have happened in the last 6 months but at least I hit the highlights.  I hope you had a Merry Christmas and a Happy New Year!

Friday, August 8, 2014

The Verdict

In case Anna didn't have enough to deal with she now has a few more things to add to her list of problems. She has Selective IgA Deficiency (SIGAD) and Specific Antibody Deficiency (SAD ).   Her IgA has become virtually undetectable. She responded well to tetanus and diphtheria booster vaccines but not well to Pneumovax. She does not build antibodies to polysaccharide vaccines. Her immunologist feels this is evolving into something called Common Variable Immune Deficiency (CVID).  The current plan (and I pray the final plan) from the immunologist is to put her on antibiotic daily from now on. She will also get a probiotic and 2 nasal sprays.  He wants the Pulmonologist to add a steroid for her lungs.  Hopefully this will decrease her number of infections. She also needs a CT of her chest.  If she has 2 breakthrough infections while on the prophylactic antibiotic within a 6 month period and/or chronic lung damage on the CT then she will have to start infusions of immune globulin every 3 weeks for life. We pray the antibiotics work!  Due to the IgA deficiency she will always be prone to catching every virus going around and it will make her sicker and last longer than for most. Our goal is to keep these viruses from turning into bacterial infections and hopefully the antibiotics will do that. Summer hasn't been too bad- when school starts back in 3 weeks it will be the true test. I know this post will require lots of googling. Sorry. I'm just too tired to explain.

Jellystone

We took our vacation this summer at a place called Jellystone. It was a great trip. We spent 5 days surrounded by a million different things to do and as an added bonus we met Yogi, BooBoo, and Cindy Bear. I'm not kidding, the possibilities for fun were endless.  Here are just a few of the things we did. I really recommend www.northtexasjellystone.com if you are looking for a family friendly place to go. We rented a cabin and it was perfect. We can't wait to go back next summer!



















Sunday, July 27, 2014

Why We Quit Church

When Kenneth and I first married we went to church almost every Sunday.  We loved to sing and listen to the sermons.  We really wanted a Christ centered marriage. We both worked weird hours- I was on night shift at the hospital and he was on his 24 on/48 off firefighter schedule so we did miss sometimes due to work but when we could be there we were. Fast forward a couple of years and we had Carly. I remember after having her I couldn't wait to take her to church. We had only been home from the hospital with her a day or two when we took her to church for the first time. I couldn't wait to introduce her to her church family. We were still pretty faithful about going and then came bed rest and Anna. After she was born we were tired. I don't just mean like newborn tired but like even at 6 months old she was still waking every 2-3 hours tired. We tried to make it when we could muster the strength but it was admittedly not as often as we liked or as often as it should have been. We ended up changing churches sometime around when Anna turned 2 (if I recall correctly).  The nursery ladies were so welcoming of Anna. She was developmentally behind and they took her in and loved her and taught her about Jesus and about love and the Bible. Then she started having seizures. The nursery ladies didn't care. They knew where we would be sitting in the sanctuary and gave us a pager to page us in case something happened while we were in the service. It was a nice break for us even if it was one hour each week. Then Anna aged out of the nursery. They would have been happy to keep her there but we wanted her to move up with kids who were closer to her age. Imagine the look of surprise on the person's face who had signed up to keep the 3s and 4s that Sunday during church when I dropped Anna off and said "This is Anna. Her speech is difficult to understand. She isn't potty trained. She has seizures.  She has a feeding tube but it should be fine and you shouldn't need to mess with it. She's a sweet kid though."  People sign up to tell bible stories and give snacks and maybe color or play with play dough. They don't sign up to change diapers and monitor for seizures. People tried to be nice but the look on their faces said it all. My child scared them and honestly I didn't blame them.  So we opted out for awhile.  But we missed church. Carly missed church. We ended up moving to Gainesville from Oklahoma and decided it was important for all of us that we tried again. Gabe was born a little before we moved and he was 6 weeks early but was pretty healthy otherwise and didn't present many challenges. We tried a church close to our house where we knew a few people.  We really liked it and more importantly Carly loved it. She had friends there and she was happy. She deserved that.  She had missed out for awhile so I was glad to see her back in church and I was happy to be back there too.  Luckily the sweet lady who does children's church was not afraid of Anna.  She welcomed her with open arms and I didn't feel the least bit afraid. But of course there were obstacles because with Anna there always are. Her seizure meds kicked in and made her almost comatose every day right about the time children's church started. So most of the time I kept her with me and held her while she slept.  She still to this day takes a pacifier and blanket to sleep and I felt so uncomfortable with people looking at her, 48+" tall and still sucking on a pacifier.  I don't think they judged near as much as I felt they were judging.  So we quit again. It just was too much. And again, I missed the music and fellowship more than I can describe. We tried every now and again to go back but every time we would go Anna would be sick within 24 hours of going. After the 5th or 6th time of getting sick right after attending we decided the germ factor was just too high and we couldn't afford the risk. Fast forward a few months and we find out Anna has this immune deficiency.  We were told to treat her like a normal kid at least until the workup is complete. Easy to say, yet harder to do when both parents work full time and somebody has to take off to stay home with her when she is sick. But then there was Carly again, longing to be at church and have sweet fellowship with her friends. Carly went to church camp last week and had an amazing time. She needed it.  I promised her we would try again to get back to church. So today we went. Kenneth is on duty so it was just the kids and I. We made it. On time even. Gabe went to 3s and 4s class and had a blast. He wants to go back next week "and bring my friend Bigfoot to church."  He's currently obsessed with Bigfoot who apparently lives somewhere by the river but also sometimes in our backyard.  Carly sat with her friends and enjoyed the music and fellowship. They did not have children's church so Anna sat with me.  She was quiet and I'm thankful for that but the entire service was like a wrestling match.  She was not still for more than 30 seconds. She was all over me and the pew and just generally exhausting to battle. I secretly thought to myself that I'd give my left arm to go back to the days of her sleeping and needing the pacifier in church because I'm totally over the staring and that would be way easier to endure anyway than the WWF I did today.  Man if felt good to be there though. I probably only caught about 30 seconds of the sermon in between wrestling but the music is something that always touches me sometimes even moves me to tears. My heart longs to be at the church on Sunday mornings and Wednesday nights. I miss it and I need it.  We all do.  So as I said we went today. I had actually planned to wait one more week because Anna's next appointment with the immunologist is this coming Friday and I'm hoping to leave there with a diagnosis and plan. But Carly begged and as a parent there really aren't a lot of worse feelings than telling your kid no when they beg to go to church. It all went well, or so I thought. We have been home less than 2 hours and guess what?  Anna has explosive diarrhea. And that is why we quit church. I pray the Dr has answers and that we only quit temporarily again this time. But please look at this as a lesson- not all people who don't go to church do so out of not wanting to be there. We want to be there. I know God understands and given this story most people do too. Special needs families have it rough sometimes when church is concerned. I didn't even get into how the lights and noise can sometimes make Anna crazy. So be patient with us. We are trying and so are most of the other special needs families I know.







Sunday, July 6, 2014

Holding Pattern

We saw the immunologist and really liked him. He was calming and although Anna wouldn't have anything to do with him at first, she was laughing with him by the end of the appointment. He ordered a bunch more labs. Some of them were repeats. They showed a lower IgA, continued neutropenia (low neutrophils which are a type of white blood cell) and that she does have immunity to measles. She still did not show immunity to tetanus, haemophilus influenzae, or strep pneumoniae. The process is to re-immunize her with DTaP and Pneumovax (which we did that day) and then wait 4 weeks and have the titers redrawn. We have about 10 more days before the redraw. Those results will determine where we go from here. It will either mean prophylactic antibiotics every other day (or 3X a week) if the vaccines take or IVIG once every 3 weeks or SCIG every week (our choice) if the vaccines don't take. The IVIG and SCIG are immunoglobulins that are either given IV or SC (subcutaneous).  They are the part of the blood that contains the antibodies that she's missing (if the vaccines don't take).  The IgA cannot be replaced because it's half life is so short but protecting for the other things will help her to stay well anyway.   So we are in a holding pattern again. So far she has been off of antibiotics for 2 weeks again and things have been ok. I pray this streak continues!

Thursday, June 19, 2014

Tour of Manhattan- Selfie Style


Times Square


Radio City Music Hall


The Subway


On the Subway


Grand Central Station


Random store where we wasted time after being evacuated from Penn Station


Tavern on the Green


Central Park


Fountain in Central Park

The other important place we went was the 9/11 Memorial but a selfie there just wouldn't be right so I'll leave you these instead. 




What an experience. It's a trip I will never forget!











Wednesday, June 4, 2014

Baseline

Thankfully about 2 weeks into the antibiotics the cough that seemed it would never go away finally began to subside but was quickly followed by a GI bug that I can only really describe as looking like something out of the Exorcist. It was one that landed Anna in the ER for a night. Some IV fluids and phenergan and we were luckily able to go home about 6 hours later. I thought it would never go away. 5 days were horrible and on the 6 th day the symptoms improved. Then on the 7th day Gabe didn't want to be left out so then he began the exercise in exorcism as well. 13 days total I cleaned vomit and wiped butts. Enough!!  Looking back on the last year it seems like Anna just can't catch a break. She catches something, gets over it only to catch something else. She's having a harder and harder time returning to baseline. I assumed it is probably due to poor nutrition but thought I'd check with Dr Goff just to be sure. He wanted to explore other avenues before chalking it all up to malnourishment. Off to the lab we went, again, for what seemed like the 5000th time this year. Anna just sticks her arm out. She never even flinches or cries anymore. That is a huge blessing but one that shouldn't be- this shouldn't be routine for her. Anyway, a few days later I got a call from Dr Goff and he said her IgA levels are very low. IgA (from my understanding) is a surface type immunity that lines mucous membranes (gut, lungs, etc).  Her labs also showed that she has not built any immunity to the vaccines she has received.   So he referred her on to an immunologist. I do not want another specialist or another diagnosis for her but I am thankful for some explanation as to why I can't keep her well. I was beginning to take it as a personal failure. I kept her out of school the last 3 weeks. 2 of the weeks for the virus (it lasted 1 week but took her another whole week to recover) and the other week because knowing what I know now I did not want to send her back to school to catch another illness. We meet the new Dr this month and I'm interested to see what can be done. Anna continues to take it all in stride. She is making gains everyday and is now typing things like "Frozen" into the iPad so she can watch videos on YouTube. Words cannot describe how it feels in my heart to see her not just making it but really succeeding in ways I thought might not ever be possible. She is a little miracle.  During the midst of the GI bug from hell we were dealt another gut punch. We live in one school district and have our kids transferred to another. We received a letter from the district we were transferred into that they would not be renewing the kids transfer for next year. To say I was livid is an understatement. I spoke with the superintendent hoping somehow he would change his mind but he didn't. He would not even reconsider. But then he said a few things that made me realize that maybe that district wasn't where my kids should be anyway. He informed me that even though Carly was an A/B student and passed all portions of her STAAR test that he didn't really care about that. All he cared about was her absences. She had a couple more than he liked so he cut her. This is the exact opposite of what I was told last year. I was told that as long as the child made good grades, passed the STAAR test, and wasn't a behavior problem that they would not be denied year to year. Guess I should've gotten that in writing. He didn't even address Anna's absences but that's a whole other ball game. Carly is not happy about starting over and about having to start wearing a uniform to school but she's adjusting to the idea. She does know a few kids in her grade and for that she and I are both thankful. And to the other stupid district- you're not too bright. You get extra money for my kids because one has dyslexia and the other has a host of educational and medical problems. Way to go if this is all about funding. One thing I have learned over the years is that God protects me and my family. He makes moves that seem illogical at the time but he sees the whole picture which we cannot. So I am trusting him that this is what is right because he remains faithful. Carly is growing up so fast it is unreal. I know many parents don't want their kids to grow up and I don't want it to go too quickly but I'm so excited to see the person she becomes. She is so beautiful inside and out. She is so intelligent and has such wit. She has become such a helper at home and strives to make things a little easier in the ways that she can. Gabe is still every bit of 3. He's so adorable but such a terror too. He is a momma's boy and I can't say that I'm upset by that. Everywhere we go I get told how handsome he is. I still look at him sometimes and can't believe he's mine.  I'm currently on a plane headed to see my sister in New York. Oh how I have missed her. The last time I saw her was in November at my grandfather's funeral. The visits are never long enough. She bought me a ticket to see her for my birthday. There couldn't have been a better gift. I think I left Anna once when she was an infant for 3 days. Other than that I have not been away from her for more than 24 hours in her 6 years on earth. I've been away from the other 2 when I have been in the hospital with Anna so they are a little more accustomed to it. I know they will all be fine because they have an awesome daddy who will make sure of it. I wouldn't change anything in my life but to take a break from the incredible load of responsibility is something I will treasure.