Doctors All Day

Today was long. Very very long. Anna's first appointment was at 10, the second at 2, and the third at 3. I hate doing the all day thing in Ft Worth but I hate going 3 separate times even more. Her first appointment was Ophthalmology. Nothing new there- she still has a lazy eye. She still has good correction and vision in said eye so no need for any intervention at this point. We will follow up in 6 months and if all is still stable we get to go to yearly visits. Yay! Then it was off to lunch and to the apple store for them to replace my phone. That's a whole other post. Then off to Neurology. I love Dr Hernandez. Anna has been having frequent seizures and we've been doing lots of med adjusting and labs. That will continue until we get it straightened out. She also has not been sleeping (even worse than normal) so if that doesn't get better soon we will up her sleeping meds also. Dr Hernandez said he knows we don't want her to be a zombie but that she has got to sleep. I'm totally ok with that. Then off to GI where surprise- Anna still isn't gaining enough weight. She's 97% for height and 50% for weight which puts her at less than 3% on the weight for height scale. We are too pack in more calories orally but if we can't we will increase her tube feeds. We are also adding more water to her feeding. She needs a bunch of labs and bone density/age studies because of the high dose PPIs (Prevacid, Nexium) for so many years. Those can leach calcium from the bones. So that's it in a nutshell. I know I'm tired because I can usually run circles around Kenneth and tonight I just can't keep up. Nighty night-

More Progress!

We are making progress, real progress! Anna was accepted into The Little Lighthouse. It is the special needs preschool I had posted about before.It is an amazing place and she is loving it. It is so much more of an appropriate placement for her than her public school pre k. I have a peace about it that I never really had about public school. Homeschooling her was going ok but I think some professional assistance plus therapy are the right direction for her. She goes for 5 hours 2 days a week and I think that is plenty. I think there are only 3 Little Lighthouse Preschools in the country and I feel so blessed to have one in my backyard. They only take 6 students at a time and for my daughter to be one of those six is such a privilege.

I was speaking with a lady at work that gave me a very interesting perspective that I had not ever considered. Her son has multiple disabilities and is in his early 20's. I was asking her a multitude of questions about raising him and about what went well, what didn't, and what she would do differently if she had it to do all over again. You always hear that you need to treat your special needs child just like your other child and never let them use their disability as a reason not to do something- it shouldn't ever be an excuse. She said they did that and they did it well. Too well in fact because when it came time to do things like drive he couldn't understand why he couldn't do it because he had always been told to not use his disability as a reason he couldn't do something. So she said you have to find a balance there. I had not ever considered that side of it. Anna will probably not ever drive and I am trying to accept that. Her seizures combined with her short term memory loss pretty much make it a no go. I'm trying to figure out how to make a disability not a disability but yet still a disability. I have not yet figured out how. I'll have to get back to you on that one.

Some freaky stomach virus is making its way through our house. If there's one thing Anna has not had to deal with this week it is constipation. Blessing in disguise? Um, I think not. Carly has had it the worst and I'm just waiting for Gave's explosion. I count us lucky though because stomach viruses rarely circulate through our home.

Homeschooling Carly is going well. We have done a bit of "unschooling" in the past few weeks as we adjust to my new work schedule. We are ditching the online program for a more traditional approach which requires more parental involvement. I'm actually glad about it because I want to be more involved with her. The "unschooling" days are days that we do things like cooking to work on math. It's basically kind of a life skills approach to learning. It's a nice break at times. I'm still certain this was and is the right thing for our family. We also are getting something monthly that a friend suggested called a kiwicrate. You can check it out at kiwicrate.com. It's this cute little box that arrives monthly with projects that kids can do mostly by themselves. It he box includes everything you need- even the scissors and glue. The kids were so excited to get a box with their names on it. In addition to an art project it also incorporates some other learning- like science or math.

We had our home visit with the MDCP nurse and case worker and all went well. We will know for 100% sure in about a month that Anna was accepted but were told they are sure she will be. We just have to wait for the paperwork to go through and then do this insane 1 night nursing home stay. Luckily one of the local nursing homes is familiar with the process which should make things easier. As we get further into the process I'll be sure to post a how to list. It cut our wait time from 8 years to 2 months to get Medicaid as a secondary insurance. We will always carry our own insurance through my work as primary. I hate having to use Medicaid but we really have no other option.

Yesterday Anna said "Mommy, I hungry. No, I seepy (sleepy)." Then boom, she hit the tile floor full force. It was over as soon as it started. I don't know if this is a new kind of seizure or if she blacked out or truly fell asleep standing up. I'm pretty sure I know the answer but I'll continue to reside in the land of denial until I talk to the neurologist hopefully tomorrow. Denial is ok. Right?

PS- morning reading time is the best and who wants to buy me some new mini blinds? One of Gabe's favorite pass times is to tear them up when we aren't looking.

Corn?

I'm posting from my phone- a first for me. This ability to post from the phone probably means more posts but also way more errors. Oh well, you can't have it all, right? So after about 6 weeks of working on the letter "A" I think she got it. She can usually recognize it and usually write it (she writes it upside down about 1/2 of the time but we are cool with that). So now we have moved on all the way to letter B. I've read that you should not move on to the next letter until you've mastered the previous one. At this rate we should complete the alphabet sometime around when I can get on AARP. But hey, progress is progress. Right? Somedays I feel like things are moving right along and some days I think beating my head against the wall would produce about the same results. So today we had been working on B for awhile. We had talked about it, colored it, cut it out, found it on a poster, made the letter b out of beans... We had worked that letter to death. Just as I think she's maybe about to get it I hand her another B picture with a certain B fruit on it and I ask her "what is this fruit that starts with a B?" She happily yells out, "Corn!" And such is learning with Anna. In happy news, the insurance has decided to pay. I don't know what changed their mind but I'm more thankful than I can even express for this. Also, through another SN mom I found out about a preschool for SN kids up to age 6 where they learn but also get ST, OT, and PT. And the best part? Even better than the fact that that preschool even exists? It's free. I'm so excited and can't wait to get Anna started. Maybe they have a solution to corn?

My Heart

Here it is- the quarterly post.  I am so sad that I don't have the time to blog anymore that I used to.  It was such a place of therapy and refuge for me.  First off, we had a great Christmas!  We actually celebrated on Christmas Eve since Kenneth was on duty Christmas Day.  It's great to have that connection with Santa that you can get hi to come a day early.  Carly's big gift was a new puppy.  Since we had to put one of our dogs, Max, to sleep a few months back because of heart worms and renal failure we had promised the kids we would get another dog.  Carly never let us forget it.  We finally decided it would be OK to get another one and so Santa delivered the cutest little Italian Greyhound.  Carly named him Season and he is fitting in great with the entire family.  I even saw our other dog, Rocko, play today with him like I haven't seen him do since Max died.  That did my heart good!  Santa brought Anna a kitchen and Gabe got a workbench with tools.  Of course they got lots of other stuff from us, too.

Pardon the psycho eye glow of Season 

Homeschooling is still going well with Carly.  We do have our struggles but we work through them and all in all I still believe it was the right thing to do.  We added more dance classes to her weekly schedule so that she gets more time with her friends and other kids her age.  Gabe continues to do well also.  He can say anything he wants to but always tries first to grunt and point.  He lives for Barney and Bubble Guppies.  I cannot believe he will be 2 at the end of February.  He is still sleeping in his crib even though he did climb out once.  He hasn't tried to climb out again so I guess for now we are safe.  

And now to the meat of this post- I am going to share some tings that are on my heart that I have debated about whether or not to share but in the end I think it is important to get it off my chest and to maybe help others not feel so alone.  First off, Anna's medical expenses are eating us alive.  Our insurance still refuses to cover the tube feeding formula although they paid to put the tube in and pay for the pump and feeding bags.  It costs $650 per month to feed her the formula.  Since starting it a few months back she has gained over 5 pounds.  That is huge.  We cannot afford to keep feeding her, but we cannot afford to stop either.  When I call Medicaid or SS  they laugh and basically tell us to either divorce or quit our jobs- otherwise we will never qualify.  Anna is also needing some therapy which we cannot  afford at $50 a visit (our copay).  We made a promise to God to stick together for better or for worse and we will do that.  We will not allow a financial situation to dictate our marital status.  Thank God we have never fought about money because if we were the type that did we would be sunk!  Quitting our jobs is not in the cards either.  We both enjoy our jobs and look forward to the time away from home and stress of home.  Don't get me wrong- work is stressful too though.  My manager recently left our facility so I am now the interim ICU manager as well as still covering my previous ICU supervisor duties.  It was a lot for 2 people to handle and now it is just all me.  My boss was going to really be a huge support to me and then suddenly she was diagnosed with a very aggressive breast cancer and she will be gone for quite awhile also.  So I am feeling a heavy weight to carry at work but I know that God will provide me the strength and wisdom to get through it.  The ICU staff is so supportive of me and back me 100% which is so helpful.  Anyway, so back to the money situation.  I got in touch with an old high school friend who has a special needs child also.  Back up- we are on the medicaid waiver wait list which is about 8 years long.  My friend told me about a way to get to the top of the list with amazing speed- like a couple of months rather than 8 years.  It is called a Rider 28 for the MDCP in Texas.  This will require a 1 night stay in a nursing home for Anna (with me by her side of course) but it will be so worth it.  It will get us immediate Medicaid which is what we need to continue to tube feed her and to get her into therapy.  They will also provide respite services so that Kenneth and I might get some sleep at night.  Anna is back to waking up at 3am and staying up for hours and it is taking its toll.  I will try my best to update as I find out more about this program and exactly how it works.  I am an educated woman who works in the health care system and I had no idea this program existed so I am certain there are others in the same boat.  Enough about the money- now for the emotions.  I was looking for a paper the other day and came across Carly's old work from Pre-k.  As I looked at the dates I realized this work was done when Carly was about 4.5 yrs old.  She knew her letters, she knew her numbers, colors, shapes, etc.  She could write her name first and last and the list goes on.  I know that parents are not supposed to compare their kids but I did.  Anna is 5.  Anna knows the letter A.  Anna knows 2 shapes.  Anna knows a couple of colors sometimes.  Anna does not know any numbers and cannot count to 5.  And that is when it happened.  I had a total OMG moment when I realized just how far behind Anna is.  Carly was not really advanced at that time- she was right on target so it is not like I am comparing to a genius.  I have just grown so used to Anna that I don't really realize sometimes were we really are with her.  She is making progress.  She is using the toilet about 10% of the time which is HUGE.  But still, I had to take a hard look at things and then I started to worry...about everything.  Will she ever learn her letters?  Her numbers?  How to read?  Potty train?  To drive?  To live independently?  To have a job?  My heart is so heavy!  I want to just rejoice and be happy that she is happy in life but I also know deep down that happiness will not get you through life.  And I worry that I am not doing enough to help her.  And I worry about if I should be starting a trust for her in case she always requires care and when we can't afford her care now where would the money to start a trust come from?  I know God has this all under control.  I know this logically.  But my heart is heavy and painful.  I do believe God will take care of things no matter what but I also believe I have to do my part but I don't even know what my part is or what it should be.  And so here I am.  Have you been here?

Merry Christmas

Merry Christmas from the 3 sweetest monkeys I know.

Becoming "Those" People

Homeschoolers?  Us?  No freaking way!  I had thought about homeschoolers from time to time.  My thoughts mostly centered around how weird they must be and how homely their children would grow up to be.  Kenneth and I had even discussed it on occasion but we knew it wasn't for us.  We weren't "those" kind of people.  Sometime about 2 weeks ago something inside of me snapped and suddenly I realized we were those kind of people.  And that is where our adventures in homeschooling began.

Let me go back a few months.  Although Carly is an AB student she struggles.  She has dyslexia and she has ADHD.  I'm not a huge fan of the whole ADHD diagnosis but if you know her then you know it fits like a glove.  The school Carly was at had a wonderful dyslexia program.  The dyslexia specialist was hands down my favorite teacher Carly ever had.  She worked with her and as she worked with her I saw great strides in Carly's reading and comprehension skills.  It was amazing.  The problem was that she was only with that teacher for 1 hour 4 days a week.  The rest of the time she was with teachers who could not seem to understand that it just takes her a little longer to finish things and that putting pressure on her to finish in a certain amount of time only makes things worse.  They were not bad teachers at all, I just think they were not a good match for Carly.  There were plenty of other kids who seemed to be excelling in there so I know they are not doing a bad job.  Anyway, most of this year Carly has come home from school crying or in a bad mood and constantly talking about how bad her days were at school.  She had plenty of friends, she wasn't being bullied or anything like that.  She was just struggling to bridge the gap between her IQ and her skills.  She scores off the chart on IQ but she struggles with day to day tasks at school and the struggle was really taking its toll on her.  Then there was the battle with Anna.  I was constatnly getting calls about her absences.  These were absences for things like EEGs and Gtube placement.  We never kept her home just for the heck of it but even if we did it is Pre-K for heaven sakes.  They wanted a note from the hosoital to prove she had really been there because apparently the gtube was not enough proof.  I suppose they thought we purchased a home installation kit.  I know, its school policy and state law, but it is still absurd.  The problem really is that this is our reality.  Anna will always have Dr appoontmnts and hospital stays and she will always be missing school.  So these things just kept building and building until poof- we had enough.

So I started researching and found on online cirriculum that does not require too much parent instruction.  After all, I still have to work 5 days a week and Kenneth still works too.  Those I know who already homeschool were very encouraging.  Those who don't homeschool were supportive but I could read the undertone of "you have lost your freaking mind."  

Here we are, a week down, and I will tell you what I have learned:

1. Public school wastes an amazing amount of time.  It's not really their fault, it is just the way it is designed and they have so many kids there that it just happens.
2. Carly is a completely differnt child now.  She said she is fianllly able to relax because nobody is rushing her.
3. Carly's whole attitude has changed.  She has been in trouble with us maybe twice this week as complared to her normal 20 times.
4. Carly is completely off of her ADHD meds- meds which the school thought she needed more of.
5. I see Carly acting more like an 8 year old than a 12 year old in regards to attitude.  I feel like the pressures at school are pushing our kids to grow up way to fast!  She is no longer hiding and lying about things she likes to do or cartoons she still likes to watch our of fear of what schoolmates would think or say.
6. I am learning to enjoy my kids more because we are not always rushing to get homework done or get here or get there...
7. I am learning that every thing in life is a school lesson.  You can teach your kids so much by using everyday experiences.

We are still tweaking our schedule to see exactly what works best.  It changed a lot just through the first week but so far it looks like we will use computer curriculum for math and language arts.  We are using a system called Time 4 Learning.  It is great for ADHD and dyslexic kids.  Those will be done on Monday and Tuesday.  Wednesday is history day and for that we are using the American Girl Doll Series.  They are fictional characters but historically accurate and Carly loves them so she is very engaged in them.  Thursday is science day and we are just going to pick things that are interesting or relevant to things going on in the news and I will develop units about them.  This week we did a unit on hurricanes.  I was fearful that she would not absorb the information but let me just say she was able to tell me so much more about what she had learned this week than ever before which she attributes to learning without distractions.

Anna is doing well too.  She also has the computer curriculum but we are doing more focus with her on letters and numbers.  She does daily worksheets and also works on skills like cutting and coloring.  She looks forward to doing her "work" everyday and was actually disappointed that I didn't have anything planned for the weekend.  When she had a GI appointment last week it was nice to take the kids and not worry about what the school would say about it.  As a side note, Anna has gained 1.5 lbs since the gbutton was placed.  That is huge!

I know this is all still new but I really feel like this is such a good fit for us.  We still have plenty of structure here but it is relaxed structure if that makes any sense.  We had committed to doing this for the rest of this school year and then we would reevaluate.  Carly told me the other day she is pretty sure she would like to homeschool next year too.  There is so much more I could go on about but that will be for the next post.

Dear UHC,

Every time something of note used to happen I would instantly think, "I need to blog about that!"  Now, a month goes by between posts and I sit down to write and realize so much goes on in a month that I can't possibly remember what to blog about.

First and foremost is that I am so not happy with our insurance company right now.  I do have to say that up until this point they have been pretty fantastic but this last month has totally changed my tune about them.  I have always gotten all of our family's prescriptions filled a local little mom and pop pharmacy.  It is a lot of prescriptions.  Monthly Kenneth gets 4 prescriptions, I get 2, Carly gets 2, and Anna gets at least 4.  The pharmacy we use is the kind where I call in refills 5 minutes before I get there and they are ready when I arrive.  They are also the kind where if I need a prescription on Monday but am broke and don't get paid until Friday they will let me have it anyway and let me pay for it on Friday.  They are the kind of place that knows us and knows our struggles and works with us.  So I got a letter in the mail last week telling me that if we continue to get our prescriptions of our "maintenance" meds filled there and not at either CVS or Caremark (mail order) that we will be charged double the retail value of the meds next time we pick them up.  Excuse me?  Let me tell you about my last experience with CVS- I went to pick up some Diastat for Anna (rectal valium for cluster seizures) and I got the med and went on my way.  Luckily I opened it when I got home and noticed the pharmacist had not even set the dose.  You have to set it and lock it in place for the thing to work.  Luckily I knew how to do it and I am glad I checked and didn't leave that for someone to find who needed it for Anna and didn't know how to lock the dose.  So ladies and gentlemen, that is how closely CVS is checking the dosages on your prescriptions-  so closely that valium could have been as much as 10 mg off.  Oh and just to be clear- there was also a big red tag sticking out of the valium box that said something to the effect of "STOP (with a big red stop sign)!  Pharmacist must dial the dose before dispensing.  Pharmacist to remove this paper after locking dose."  Lucky for Kenneth, he has his own insurance through his job and can stay with the local place.  The kids and I can't though and I am not at all happy about it!  So I was already pissed about the pharmacy fiasco and then I got a another letter that was a denial of coverage for Anna's tube feeding formula.  So let me get this right- the same company that paid to put the gbutton in, and pays for the pump and related supplies, does not see the tube feeding as medically necessary to pay for because Anna does not receive 100% of her nutrition through the tube.  This is nothing less then insane.  I will be on the horn with them first thing in the morning.  This is a battle I am geared up to fight and I will win!  You want to know what chaps my hide even more?  They will pay for whatever people need when it comes to obesity because apparently that can make people sick.  Newsflash United Healthcare, being grossly underweight isn't exactly healthy either.  A nurse I work with was able to get her Medifast food covered because she is "pre-diabetic" and needed to loose about 15 pounds.  I am happy for her that she was able to get what she needed.  But we can't get tube feeding?  How exactly do they justify that?  

And now for the rest of the details which will be delivered bullet style because I am tired (or lazy?):

• I am enrolled in school...AGAIN.  I will be getting a bachelor's in nursing.  I already have an associates degree in nursing.  The education will change nothing about my job.  Currently the hospital will pay for my schooling and I decided I better take advantage of that.  I'm sure the program won't be around forever and I will be kicking myself later if i have to pay for something that could have been free.
• Carly attended another sibshop through Cook Children's at a place called Rocky Top Ranch.  Let me just say this is an amazing place with amazing people.  My hats off to all of the volunteers who made Camp Courage happen.  
• Gabe is part monkey.  He is 19 months old and climbing EVERYTHING!  I found him climbing the stove tonight while my back was turned- I was in the kitchen.  He is that quick.  I'm a pro at child proofing a house but monkey proofing will prove to be a whole other realm.  The third child...oye!
• We dumped the Dish and got a Roku box.  That's a smooth $75 extra in my pocket every month.  Nice!  The only downfall is the availability of that damn purple dinosaur named Barney 24/7.
• I don't care if people want to use coupons and price match.  I'm glad they can do that.  But really- shouldn't those people have their own line at the check out?  I always get behind the couponing price matching queen.  Shouldn't there be some perks for paying full price?

Well, the dryer is done, the kids are asleep, the husband is not currently snoring, and I am tired SO all of that together equals time for me to hit the hay.  Night!