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.