Living Life: Nursing Home Style

So I think I had left off where we were waiting to do our nursing home stay to finally secure our place in the Medicaid waiver program.  It was strange trying to explain what a nursing home is to a 5 year old let alone trying to explain why we had to stay there.  We arrived around 8PM and were told we had to stay until after midnight but could leave any time thereafter.  I actually thought we would just stay the whole night because once we get Anna to sleep it is wise not to wake her.  Kenneth stayed home with the other 2 while Anna and I loaded up and headed to the nursing home.  It was storming hard and pouring down rain there and all I could think about was the Casting Crowns song "Praise You In This Storm" as I drove there.  Who ever thought I would be spending a night in a nursing home with my child as hopefully the final hoop to jump through to secure what my daughter so desperately needs. 

Anna fell asleep rather easily after watching a few episodes of iCarly.  I had just drifted off when Kenneth called and all I could hear in the background was Gabe screaming and crying.  Kenneth is not the type to ask for help so I knew when he called things must be bad.  Luckily it was after midnight so I loaded up all of our stuff and a sleeping Anna and headed home.  I was pretty much unable to console him either.  He was clearly miserable and had a fairly high fever also.  I took him to the Dr. the next morning and was told it was likely something viral and to give him Motrin and Tylenol.  No sooner had I gotten home from the Dr when I looked in his mouth and found this-  this was one of the many blisters covering his tongue and mouth.

I gave Motrin and Tylenol all day with no relief for him.  He couldn't eat, drink, or sleep.  After hours of that I finally decided to take him to the ER.  They gave him some magic mouthwash which numbed the tongue and he continued to cry and cry.  They finally gave him some Tylenol with codeine and thank God he calmed down and suddenly became this kid...

This dreaded virus went on for about 10 days.  I later found out from our pediatrician that it is called Acute Herpetic Gingivostomatitis.  It arises when a child has their first exposure to the Herpes I virus (think fever blisters).  I'm not sure where he picked it up but thank God that after the first time it isn't ever supposed to be that bad again.  So, back to the nursing home.  It really wasn't so bad.  The one we chose had a small aviary inside so Anna was content to just look at the birds until it was bedtime.  After the stay was complete we were called and told Anna officially has Medicaid and that we now get 28 hours of respite care per week.  Amen!  We chose what is called the CDS option which allows us to hire who we want for the hours we want and we just pay a fee to a service to take care of all of the tax stuff.  The other option is an agency option.  I really wanted to choose who is with Anna so we went with CDS.  It is a little more work in the beginning for me but in the end it will be worth the peace of mind.  I never wanted to "depend on the system" and I hope to always be able to carry a primary insurance and not depend on Medicaid for everything but I must say that having that little card has opened doors I never imagined existed.  Anna is finally able to get private speech therapy that our insurance never would have paid for.  The 20-30% of her medical expenses that our insurance didn't cover are now covered.  For those without medically dependent kids I am sure you are wondering how much 20-30% could really be.  Trust me.  It is a lot.  Like multiple hundreds of dollars if not more per month.  Since Anna's birth our financial situation has been difficult.  Please don't read that as blame.  It is not.  We have not always made the best financial decisions but the bad decisions were much harder to recover from with the mounting medical costs.  I think for the first time in 5 years we can breathe from a financial stand point.  We might even laugh and be silly just a little bit more because financial problems do create stress.

Homeschooling with Carly is still going well.  We are still finding what works for her.  I am really enjoying getting to spend some 1:1 time with her most days the teaching is good for me too.  It makes me use my brain and get creative with ways to make things stick with her.  She is so smart is scary.  They say kids with dyslexia are usually exceptionally smart.  They are not lying.  She is an old soul who is wise beyond her years and I couldn't be more proud of her for the lady she is becoming.  She has learned to be kind and to respect all kinds of people at a young age- something many adults cannot do.  Don't get me wrong, she is still an 8 year old but she is just amazing! 

Anna and Gabe are amazing too. They all light up my world every day with their sweet smiles. Although I love having them young I also am excited to watch them grow up and to see who they become- they all have so much potential.



Rest In Peace Gavin

I had some time and many many things to update about.  But I can't.  I can't because it just doesn't seem right to blog about all of the things going on in my childrens' lives when another special needs mother is grieving the loss of hers.  Please take a moment to read about Gavin and then take the time to help his mother by somehow paying it forward.  As for my updates, they will come later, when it feels right.

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.