Loretta

It felt like we waited forever to hear there was a nurse interested in taking care of Anna, but in reality it was only about a week and a half.  We set up a meeting so that we could interview the nurse and she could interview us.  Our prayer was that either she would be a perfect fit and that if she wasn't that we would not settle for less than Anna or our family deserves just out of desperation.  The meeting day came and I was more nervous about what to ask her than what she was going to be like.  I have to believe this sense of calm came from the fact that we have been covered in prayer.  In walked Loretta and before she even spoke I felt nothing but peace.  She looked to be probably in her 60s.  She was kind and gentle.  We talked about her expectations and ours.  I asked about previous assignments.  The last one she had was a girl who had the same diagnoses and mostly the same meds as Anna but was much more severe.  Loretta cared for the girl for 7.5 years until the little girl passed away.  7.5 years tells me a few things, the 2 most important of which are that she shows up and she is committed.  She has grown children which she homeschooled so she gets that about us also.  She has a very strong faith and I like to think she had prayed for the right family as much as we had prayed for the right nurse.  She basically had one request, that she could come a little later on nights when she has church.  Uh yeah, we encourage that and can totally do that.  Our cat Samantha who usually runs from people couldn't stop loving on Loretta.  That too was a sure sign.  It is going to be a huge adjustment to have someone in our house but we are ready to adjust.  We need the help.  God continues to be faithful in each and every situation we encounter.  I will be taking Carly to Austin for a couple of days next week for 4H day at the capital.  It will be a far better lesson on government than any I could provide.  I actually feel some peace knowing Loretta will be here because Kenneth just flat out doesn't hear Anna at night.  That would mean 1 of 2 things: either I would have to take Anna to ensure she is heard at night or we would have to skip her feeds while I was gone. Neither option is very desirable.  I know Anna wants to go on the trip but just as much as she desperately wants to go Carly desperately needs some alone time with me.  She's in the tween years and I see how fast she is growing up.  I want to remain close to her and keep the open communication we have.  When she doesn't get enough attention or time with me she begins to close off and become resentful of Anna and that is something I never want.  None of this is Anna's fault, but it's not Carly's either.  It's such a struggle to continue to find the balance but I will never give up on trying.

Rough Seas

The nursing agency came out yesterday and assessed our current situation.  They asked a million and one questions.  The RN that came out was, I swear, hand picked from above for us.  She is a foster mom to children with special needs.   I think she has 3 or 4 at any given time.  She has had to bury 2 of them, one of which she had for 12 years.  It was so easy to talk to her because she gets the fatigue I am talking about and living with.  At the end of the assessment she determined that we qualify for 87.5 hours of nursing per week.  We did not need that much so we settled on 70 hrs/week.  Over the next week we will be meeting with different nurses to find the ones that are a good fit for Anna and for our family.  Please pray with us and for us and we try to pick the best fit and as we transition into this new chapter of our lives.  Today has been emotionally hard again.  Yesterday was better but today it hit me like a ton of bricks.  I have a kid who needs a nurse.  For 87.5 hrs/week.  In my home. She's such a typical kid in so many ways but then on days like today the differences are stinging much more than they usually do .  I've said it before and it hasn't changed.  Grief is such a weird thing.  It's so much like the ocean.  It's more vast than you can imagine.  It has tides.  Sometimes it is calm and sometimes it is so rough it almost takes you under.  Then sometimes the sun shines and the waves calmly splash upon the beautiful beach and the vastness of the ocean cannot be outdone by its beauty.  I hope tomorrow is a day of beauty because the rough seas are all consuming.

Private Duty

*disclaimer- I did not spellcheck or proofread this, read at your own risk*
My heart is heavy tonight.  I will preface this by saying that I know we are blessed to have things as good as we do but sometimes reality just plain stinks.  There are many dealing with much worse but right now this is what we are dealing with and it makes me sad.  For the past 2 or 3 years I have slept in the living room with Anna at night and Kenneth has slept in our bedroom.  This was, of course, not an ideal situation for anyone but 1.  Kenneth snored really loud  2.  My back felt better sleeping in a recliner (old ICU injury) 3.  Being in the same room with Anna gave us all some sense of safety for her and it allowed me to be near if her feeding pump had issues or if she needed to get up for something or if she got choked or had a seizure of whatever scenario you want to choose.  It was a weird arrangement but it was what we had to do at the time to get through.  Fast forward to about 6-8 weeks ago.  Kenneth and I embarked on a journey to better health.  We started a Beachbody program called The 21 Day Fix.  We both were feeling so much better on the program and somehow Kenneth stopped snoring.  This was something even sinus surgery had not been able to accomplish.  Then my back stopped hurting.  Suddenly it looked as if us sleeping in the same room again might become a possibility.  I waited a couple of weeks to make sure the changes would stick and they did.  We made the decision at that time to move Anna to her room at night and move me back into the bedroom.  Kenneth and I desperately want to be more husband and wife and less of just roommates.  There is a startling statistic about the divorce rate in marriages when there is a special needs child in the home.  We do not want to ever be this statistic.  We put Anna in the bedroom closest to us which meant also moving Gabe into a different room.  It was a pain but we thought it was well worth the work.  We bought a baby monitor and explained to Anna that it was a "big girl monitor" and that if she needed anything in the night all she had to do was talk to me on the monitor.  She has been doing great about telling me when she needs to get up to go to the bathroom or just needs me for whatever.  She cannot roll the pole with her feeds with her without tipping it over, this is why she needs my help.  She is fed continuously via her Gtube overnight.  Anyway, this arrangement seemed like a great idea.  It is except for one thing, I'm not sleeping.  I'm up on average of 6 times per night because she needs me or because I hear her and have to get up to check on her.  Yes, Kenneth would get up but he doesn't hear her.  He sleeps, well, like a man.  Heavily.  I could wake him up but I'm already up and I don't see the point in us both being up.  I cannot turn the monitor off.  Anna has no other way to get me if she needs me.  So here I am, stuck, feeling like I need to chose between my child and my husband.  Either I sleep in the bed with him and get no rest or I sleep with her and neglect him.  Neither option is appealing.  My lack of sleep is weighing on everyone.  I've become someone I don't like.  I have lost my patience more times than I care to admit over the most trivial things.  I've lost it with Kenneth and with Carly and neither deserved it.  Then I end up feeling even worse.  My work is suffering.  I'm not doing much good in very many places right now.  So after years of doing this on our own we are having to ask for help.  We are on the path to getting a private duty nurse to sit with Anna every night (at least during the week).  The nurse will allow me to turn off the baby monitor and sleep without the worry of what Anna needs at night.  So why is my heart so heavy about this?  The rational part of me knows this is best.  It knows that as things stand right now I am not any good to anyone.  The other part of me is heartbroken that I can't take care of my own child.  That part of me feels selfish that I am choosing sleep over caring for her.  To get the nursing process started I have to take Anna to see our pediatrician tomorrow.  There has to be a visit within the past 30 days for nursing to begin.  So I told Anna I am taking her to see Dr Goff tomorrow.  She of course asked why.  I thought about skirting the issue but decided she would be there tomorrow at the appointment and would clearly see a nurse at our house so I needed to just be honest with her.  I explained to her why we needed a nurse.  I explained that as much as I want to be able to do everything for her I can't and I am tired.  I explained that the nurse would help mommy to get some sleep so that mommy wouldn't be so crabby all of the time.  Her response was that she just wants mommy to do it.  It broke my heart.  I don't ever want her to think I don't love her enough to take care of her.  I don't want her to think she wasn't important enough for me to care for.  I don't want her to feel that I chose sleep over her. In her 7 year old mind though I can't imagine that she doesn't feel this way and that breaks my heart.  And so my heart is heavy but I am going to carry on because I have to do what is right for all of us, not just Anna, and my family deserves all of me, not just the tiny pieces they have been getting.

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, and 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!

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!

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.