Friday, August 8, 2014
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.
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
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
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
Radio City Music Hall
On the Subway
Grand Central Station
Random store where we wasted time after being evacuated from Penn Station
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
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.
Monday, May 12, 2014
So we saw the new GI. While in the patient room for the Dr to come in the song "God of Angel Armies" played over the radio in his office. I knew at that very moment that we were exactly where we were supposed to be. Then he came in and I got to thank him for his wisdom at the beginning of this journey which was something I had always wanted to do but was somewhat afraid and didn't know how. He was kind and humble about it. The GI gave us a few suggestions about medication timing but otherwise said his recommendations would depend on the findings of a Pulmonologist. He referred her to one that he said he works together with a lot. I had no idea what that really meant but went with his suggestion since I didn't know anyone else and since this GI had gained my trust and respect. I got her an appointment with the Pulmonologist for a few weeks after the GI. He was thorough. He was thinking maybe the problem originated with a sinus infection that wasn't clearing up. He sent Anna for sinus X-rays in the middle of the visit. They came back clear. So then the craziest thing happened- the pulm called the GI. This is unheard of among any specialists we have met with up to this point. It is always left for me to relay information and messages and although I am an RN I am also a mom and also not a Dr. This should not be left up to me. So the new Drs decided the best thing would be to do a bronchoscopy and EGD, get this, at the same time. They said they wanted to minimize anesthesia and cost. Crazy town. So last Friday she had the procedures.
Sunday, April 13, 2014
After staying frustrated with our current GIs office for quite awhile now, they officially pushed me over the edge last week. I love the Dr. I do. He is great. That's the problem though. He is so good that he has too many patients. He can't keep up. When I call to make an appointment the soonest available is 2 months away. I could understand if we were new pt's but we aren't. We have been there for almost 6 years. So the solution (according to the office) is to handle as much as possible over the phone. I'd be fine with that if I could actually talk to (or even email) the doctor. But I can't. It's not an option. I have to leave a voicemail for the nurse or medical assistant who will then relay the message (inaccurately) to the Dr. Then the medical assistant or nurse of the day will call me back with an answer which makes no sense because the Dr didn't get the correct original message. So I get pissed and tell them the right message again which they relay wrong again... This has gone on for as long as I can stand. I don't want my daughter to be a patient in a practice that is this busy. It's not safe and it's not fair to her. So we are now coming full circle. If you know Anna's story you know the whole thing began in a GIs office. We went to find out why she wasn't gaining weight and were told by that GI that we needed to get her to a neurologist because she had much bigger problems than weight gain going on. We never went back. We ended up trying to keep all of Anna's MDs in the Cook's system. But now we are going back. I trust this guy. He clearly knew what he was talking about even back then. I don't remember him or what he looked like or what the office looked like. I think I've blocked all of that out. I would be lying if I said I am not scared to go. I'm afraid it will bring back memories that are so incredibly painful that I don't want to remember. But we must go and we must do this. Anna needs someone to listen and pay attention. She deserves it. So I'm putting my emotions aside and taking her tomorrow to where she needs to be. Please say a prayer for all of us- for her, for me, and for the Dr. We need answers.
Wednesday, April 9, 2014
Lamictal is the med we have dreamed of! Anna has had only 2 seizures since beginning on it and they were short and mild. It has taken from the end of January until today to get to the full dose but we are finally there. Anna has made more progress at school since the med change than I have seen in a very long time. She is counting without problems. She is remembering letters. She is recognizing numbers. She can enter "3-0-0" on the microwave all by herself and that is huge. One of my goals for her this year was to recognize numbers so that she could cook herself some popcorn or something like that with minimal assistance. Look at the last post at her spelling test. Now look at this:
Unbelievable! I can't even believe it is the same kid. I cant explain how good this feels for me so I know it must be so amazing for her too. I swear there is a genius in there just dying to come out. But of course with every positive we are usually certain there will be something not so positive to accompany it. Anna has been on antibiotics twice within the past 2 1/2 weeks. She will spike a high fever and wake up with a junky cough. She had a CXR which confirms she has been aspirating. I truly believe it is happening at night and not with eating and drinking. She had a swallow study back in January that was mostly normal and the choking she had been doing has mostly resolved. We continue to use small diameter straws with all liquids to help her. I hear her do this weird swallowing thing at night and I have been pretty sure it has to do with reflux. Years ago she was scheduled to have a fundoplication which we ended up canceling and avoiding with pyloric dilation. It seemed that the delayed gastric emptying was causing things to back up which was actually the problem. Once that was fixed things improved. Well the pyloric dilation is still in effect but now there is reflux and aspiration again. We may be looking at surgery again. I hate more than anything in the world to put her through it. It breaks my heart. But lung damage is serious and I have to look at the big picture. To say I am frustrated with the GIs office would be an understatement but that's a whole other post. Suffice it to say it would be nice to communicate directly with a doctor and not through staff who can't seem to relay a message accurately. There will be more to come on this whole issue. For now we continue the augmentin and hope for the best. Thinking about putting her through another procedure makes me want to vomit. Excuse me while I head to the toilet.
Friday, March 7, 2014
This is the second spelling test Anna has taken this year. It looks very similar to the first one. The only discernible letters on it are the "A" and "N" at the top. The first test broke my heart. The other kids were all writing letters and words and are spelling and reading. But guess what happened this time? I don't care. You want to know why I don't care? Because in the beginning this is how Anna's hands were:
This was her at 7 months. Her hands stayed in tight fists with thumbs in and she wore splints in hopes that someday she would relax her hands and pull her thumbs out. Guess what, she did. Now she can hold a pencil. Why else don't I care? Because at the beginning of this year she could not write her name and she did not know any letters. She did not follow along with the class. But now? She did and she does. She followed along and tried to write the words. And in my book that is huge. If it's not huge to you well guess what- I don't care about that either.
Thursday, March 6, 2014
The daytime feedings are actually going well. Going well except for days like today when I hook her up and send her to school but somehow in the morning rush forget to actually turn the pump on and push run. Oops. So then she has carried a backpack with a pump and a liter of tube feeding around all day which I'm guessing puts us at minus a few calories today. Ack!! I was saying I need to get it together better in the mornings to which Anna said, "Excuses, excuses." She's not short on wit and sarcasm. I added some Velcro and to the backpack and bought some patches so she can change them out daily and make the backpack a bit fancier. I spent about $15 and voila!
She's now having some issues in department #2 if you know what I mean. I won't go into too much detail because some day she will kill me for it. Suffice it to say there is blood where there shouldn't be. So now I get to play poop collector and she will have some X-rays also.
We are still working our way up on the Lamictal. So far so good. She was doing some weird lip smacking thing yesterday and I'm curious if that was some activity but sometimes you just don't know. I'll never know. Either way it stopped and so we press on. I have begun to notice she has been very emotional also and I don't know if it's a phase, seizures, or the meds. Time will tell.
I finally broke down and got handicapped plates for my car. I won't lie. When I got them my heart broke a little. They are on the car but I still have yet to park in a handicapped spot. Somedays I still can't believe we are those people that need those spaces. I'm not sure why it's such a hard/big deal for me but it is.
Wow, much more to say but my eyes are not cooperating. Maybe tomorrow.
Tuesday, February 25, 2014
This happened yesterday. This little boy who stole my heart upon his arrival turned 3. He is all boy all the time. He is full of sweetness and meanness all at the same time. He thinks he's 10 feet tall and bulletproof until he sees a shadow. He is talking up a storm. He makes me crazy every single day but I cannot imagine a day without him. Happy 3rd Birthday, Gabe!
Saturday, February 15, 2014
I'm not sure what has brought it all back up. It could have been that one of my best friends had a baby after a hypertensive pregnancy and her baby is fine. Maybe it's because some other friends just had a baby that is still in the NICU and has a poor prognosis due to low oxygen levels. Maybe it's just the tides and waves of grief. I don't know. But whatever it is I just wish it would leave. I relive this crap every single day. What if I had gone to another doctor? What if I had gone to another hospital? What if they had delivered her earlier? What if they had not just charted but actually done something about her dusky color and abnormal muscle tone and poor eating? The truth of the matter is that none of it matters. It's too late and it doesn't matter. Every single day I go though this scenario and every single day I just try to push it away. I'm angry, I'm sad, I'm confused. I thought I had forgiven but now I'm not so sure. I'm trying though. I'm trying so hard to dig my way back out of this hole because I know it doesn't do anybody any good. I know I am commanded to forgive. So I will but I still have so much to work though and so much work to do. I'm just glad that I am learning that forgiveness and restoration are not the same thing. I started reading a book called "Forgiving The Unforgivable" and it is helping me. It is opening my eyes to so many things and for that I am grateful. So just so you know- having a special needs brain injured cerebral palsied epileptic tube fed kid is not a horrible thing. I love Anna and I would never change who she is. I just hate the struggles that she has that didn't have to be. Grief is real though and although it waxes and wanes it doesn't seem to ever totally go away. With every missed milestone there is grief but for every missed milestone there is a triumph of some sort that makes it all worth it.
Anna started the new seizure medicine and we are moving the dose up ever so slowly. So far so good. She had a rash one day which scared me but some Benadryl fixed it and luckily it didn't turn out to be "the rash" that is so feared with Lamictal. She has had one seizure since being in the hospital. It's one more than I would like but I also know she is not anywhere near the full dose of medicine so I just have to sit and wait. I took Anna to the doctor on Monday for an earache. Her ear was not infected (yay!) but her tube is out and rubbing on her eardrum which is why it is hurting. There's not much we can do but wait for the tube to move. So yay, good appointment, right? Wrong. Dr. Goff pointed out that Anna had lost weight and her BMI is not even on the chart anymore. It would have been an easy fix a couple of years ago but now Anna is 6 and has opinions about tube feedings. Most of those opinions are not positive ones. We were able to compromise with something I found odd but if it works then ok. Anna is now doing continuous daytime feedings in exchange for not getting nighttime feedings. I have more hours in the day so I can get more calories in her. I'm also supposed to start back adding Duocal to the Peptamen to hopefully get her daily calories more near where they should be. She handled it fairly well this week and I'm so thankful for her teachers and aides who made it easy.
We met with the DME company to order a medical stroller. That was a tough pill for me to swallow. It was great when we could just use the regular stroller and pretend everything was "normal". Those days are gone. She doesn't fit those strollers anymore. Next will be handicapped tags for my car. I hate to do it but the long walks sometimes wear her out and she is burning precious calories that we can't afford for her to burn.
I'm nervous about what we are going to do for school next year. We are to the point that we need to decide on Inclusion or not. There are so many positives and negatives and I just don't know what is right for her. That will be a whole other post and I'm not ready to go there yet.
You would think after reading this that things are falling apart but honestly they aren't. We are doing well in so many ways. Anna continues to make progress daily. The other two kids remains just as amazing as Anna. They are each so different.
If you have a spare moment please say a prayer for some friends from church. Here's the story:
You could make a donation too if you want.
Tuesday, February 4, 2014
Saturday, February 1, 2014
She said,"As I recall, she was very hyper and excited about her birthday. We went to lunchroom and began to eat. I looked at her and she was staring off. I said her name a few times. She did not respond. Mrs A was sitting next to her so I asked her to get Anna's attention. She touched her arm to get her attention but no response. I called nurse. We laid her in floor until seizure was over (maybe 2 minutes). We carried her to nurses office and monitored her until you got there."
Saturday, January 4, 2014
Winter in Texas has been, well, cold. It is not really normal for it to be too cold in December but this year has been an exception for sure. We had a nasty ice storm that kept the kids out of school for an entire week. I know, I know, people say here in Texas we cancel school for one snowflake. That is mostly true but this was totally different. It was bad even according to those who are used to bad weather. The kids had a little fun in it but overall it just trapped us in the house and made us grumpy. We got out a couple of times to go to the store but those trips were mostly worthless because the trucks couldn't deliver to the stores so they were out of milk, bread, eggs, meat... Luckily I stocked up on most of that stuff prior to the storm. And yes, Gabe's gloves are socks. It is Texas people and we don't own winter gear.
It was the Chuck E Cheese party she had dreamed of. It made her happy and couldn't have been any easier for me.were stressing me out when I received these awesome gifts from my sister. They made my day and cracked me up. I got the Snuggie of my dreams. Haha!