Witt's End

I am blessed.  I know this.  I know things could be worse.  I know this.  But right now, right at this very moment I feel as if I am going to explode.  I really do not feel like I can take a whole lot more on my plate.  It is full.  People are always amazed at how calm I remain through all that goes on.  The answer is God.  My faith keeps me calm.  The other thing that keeps me calm is that I have learned that worrying takes too much energy and I have exactly zero energy to spare.  But right now, right at this moment, I am pretty sure I have found where witt's end is.

Last week, Kenneth's mom fell off a stepladder and down some stairs.  She was taken to the ER (insert whole other long story here) and then transferred to another hospital with a neurosurgeon because the original ER saw a brain bleed on CT scan.  The second hospital said there was no bleed and sent her home with a broken wrist, stitches in her head, and some serious confusion and forgetfulness.  She will be having surgery on Tuesday to fix her wrist.  Since last Tuesday when this happened she has required around the clock care.  Tonight she will be staying alone for the first time but after surgery will likely need care again.

Carly starts school tomorrow.  I will be able to take her to school but I will not be able to pick her up.  I will be leaving straight from her school to take Anna to the hospital for her 48 hr EEG and MRI.  For anyone who has ever had a child in the hospital you know how completely exhausting this is.  More exhausting than the hospital stay is the thoughts in my mind about why we are having this stay.  For those who haven't read the previous post or who I haven't talked about it to (there are only a very few I have talked about it to because it is just too much) this EEG and MRI are in preparation for possible brain surgery for Anna because her epilepsy is medication resistant.

Kenneth had taken off work to be here with the other 2 kids while I was away with Anna and now the other 2 will be shuffled around because he also needs to be with his mom for her surgery.  I expect it to go well but she is no spring chicken and I fear the anesthesia may bring back the confusion she has had this week.

We went to meet the teacher night and when meeting Anna's teacher (who was already supposed to be prepared for having Anna in her class) I learned she knew absolutely nothing of Anna's IEP, epilepsy, potty training...None of it.  I had relaxed about school and was really thinking things would be fine.  Now I'm not so sure.  Her teacher, by all accounts, is a great teacher.  That is fantastic but the cross between the deer in headlights look and the oh shit look I got from her when the word seizures came out of my mouth is less than comforting.  So when Anna starts school on Thursday this is what I have to look forward to and deal with.

Our regular babysitter Christy who has kept our kids for 4+ years had to have back surgery and will be out for another 6 weeks.  She has already been gone over a month.  Poor girl.  It is not at all her fault and she just keeps apologizing.  We had a fill in sitter but she had to go back to school.  Kenneth's mom was our back up and is clearly no longer the back up.  So on top of all of this other crap we are babysitterless.  It's hard to find a good sitter for any kid but factor in taking Anna to and from school for 1/2 day pre-k, and her seizures, and potty issues...and finding a sitter is next to impossible.  Thank God for an amazing boss and flexible job that I can hopefully work opposite of Kenneth's schedule for 6 weeks so somebody will be home.  It is not ideal for anyone involved but it is an option I am thankful for.

Need I go on?  I would, believe me, but I need to go pack and feed the kids and make sure all is ready for me to be gone.  Oh and I'll probably need a beer or 2 also.

Being A Little Too Human

How did a post a day become a post per week become a post every two weeks become a post every month?  3 kids, that's how it happens.  I love them so much but they keep me so very busy.  I wouldn't trade it for anything in the world!  But do I regret the hysterectomy and ending the chance to ever do this again?  Absolutely not!  I can say it was probably one of the best decisions I have ever made (except for marrying my husband and having 3 beautiful children).  I am still exhausted though.  SO very exhausted but it's a totally different exhaustion than it was before.  Before it was the can't keep my head up kind of tired from the anemia and now it is the kind of tired where my mind just won't stop.  I think about how blogging used to relax me and now when I think about blogging I realize I can't even pick the thoughts apart to record them.  So here's the bottom line.  I'm scared.  I had talked awhile back about Anna's neuropsych testing.  At the time I just thought we were having it done because it would help us to know strengths and weaknesses and how best to help her learn.  And all of that is true.  It did/will do that.  It will help her get services at school.  That was the bottom line for me.  But still, it broke my heart to be told she has an IQ of 78 which falls in the borderline range.  It broke my heart to see the written words "cognitive disorder with deficits in mixed receptive-expressive language disorder, visual motor, visual-spatial, and fine motor skills, short term memory/working memory, and executive functioning."  It broke my heart to be told that setting up a trust for her for when she gets older wouldn't be a bad idea.  It is not that I am letting them tell me what my kid will not accomplish but what it is doing is making me take a hard painful look at reality.  It has been hurting my heart but I keep going on.  Fast forward a few weeks.  I notice Anna is having many more seizures.  She is falling more and her whole attitude is different.  We stopped the periactin in hopes that was the problem and it has helped some but that wasn't all of it.  So I called and spoke with her neurologist and I was hoping for a med change.  Wrong.  Instead we are doing a 48 hr video EEG and another MRI which of course requires anesthesia (this in addition tot he anesthesia she will undergo for the root canal she needs).  At Anna's last neurology appointment we had discussed what another medication failure would mean.  It would mean that the next step could be surgery to remove the offending place in her brain.  When I left her last appointment I was not even rattled by that because I knew it wouldn't come to that.  But here we are, with another medication failure and continued seizures despite trials of maximum doses of 2 AEDs (anti epileptic drugs).  So now I see why else the neuropsych testing had to be done.  It was all in the planning for what Dr. Hernandez knew was coming.  It has to be done prior to the surgery, as does the 48 hr EEG and special type MRI that has been ordered.  I cannot even discuss it with Kenneth.  Don't fault me for that. I'm doing the best I know how to do.  I am always the one to make the medical decisions and I just don't know if I can make this one.  Do I allow the surgery and the great risk that comes with it in the hopes of a cure and the hopes of stopping the damage the seizures are causing to her memory and behavior or do I let her continue to have the seizures and just keep trying different meds?  I don't know.  I don't really care for either decision and the thought makes me want to puke.  So I am scared.  I know God will carry us through this.  I know he will.  He can move mountains.  But today I am feeling just a little too human.  As for her starting school, well, that's a whole other post!

Parents Beware

I cannot for the life of me understand some people.  Especially pedophiles.  I don't really want to understand them.  This post is about a wake up call I've had and I hope it will serve as one for you as well.

As you will notice, on the sidebar of my blog is a live traffic feed.  It is simply something I added to my blog long ago because I just like to see where all of my readers come from.  I can see what people search for when they happen upon my blog so I know sometimes what topics are of interest to other people and other parents of special needs children.  That was the ONLY purpose I had in putting it there.  I never realized how valuable of a tool it would become.

I periodically check and see where people are coming from and noticed a couple of months ago that someone from some place had looked at a post that I had written long ago.  There wasn't much about parenting in that post.  It was more about something we had done as a family.  There were a few pictures of the girls playing in their little kiddie pool in their bathing suits and then some of us camping outside and again the kids were around the campfire in their bathing suits.  They were 3 and 6 at the time.

Each time I checked my live feed I would see that the same location had visited that same post over and over again.  I began to get creeped out that maybe they were looking at those pictures in a way I had not ever intended.  So I decided the best thing would be to delete the pictures.  I deleted them.  I expected the problem to resolve.  I went back the next day and found that someone from that same location was now looking at a picture of my children in the bathtub when they were about 4 and 1 years of age.  I again never saw anything but innocence in that picture. 

It is not enough to tell you that I feel disgusted and sick to my stomach that someone seems to be looking at my sweet innocent little girls in a way like that and that the blog I intended to use to journal is being used in ways that absolutely disgust me.

I called the police department of the town where this person is from and they seemed quite interested in the information but cannot do anything without the IP address of the person looking at the pictures and I have no idea what the IP address is.  I have removed the pictures but I am saddened that there cannot even be any innocent pictures of my kids playing in the bath together or in the kiddie pool together.  Who doesn't have and treasure those pictures of their children.

So fellow bloggers and others who have things like their facebook accounts wide open beware of what you post.  Sometimes those looking at your sweet innocent cute little children are seeing them as much more than that.

Square One

I guess I left off with us still at the hospital and me in a rage.  I was so frustrated.  Then as quick as Anna got sick, she seemed to get better and I began to question my sanity and ability to understasnd what was going on with her.  They started her on clear liquids and she did fine, then she ate a full dinner and other than some rancid diarrhea she was good.  We got to finally go home on Saturday with what appeared to be a case of post viral gastroparesis which resolved on its own.  Yay!  Anna ate great for the first week or so.  She ate everything that didn't eat her first.  She was wanting scrambled eggs, 3-4 at a time, for almost every meal.  Our babysitter took her to eat catfish and she ate 4 fillets.  She was an eating machine.  Notice I said was.  Then as quickly as she had started eating she stopped again.  There is no vomiting and there are no complaints of nausea or "I'm afraid I'm going to puke up" as she says it this time.  She just won't eat.  Great.  We are back at square one.  I called the GI and they couldn't get us in until August.  Our pediatrician got that moved up and we saw the GI last Wednesday.  He started with doubling her reflux meds and adding back the Miralax to see if that is the problem.  So far it has not made any difference.  He told us she needs no less than 1400 calories a day just to maintain.  We are having a good day when we get 600-800 calories in her.  She is losing weight- precious weight that took years to gain.  If she is not eating in the next 2 weeks the GI wants to try Periactin again.  It did increase her appetite a bit the first time but it also made her crazy.  She was beating her head into the wall and biting herself and just having all kinds of self destreuctive behavior.  Kenneth and I are not sure if we want to go that route again.  If that doesn't work he wants to try some feeding therapy and then likely the G button again.  I'm not afraid of the button and quite honestly at least she would get the nutrition.  She has bruises over all of her bony prominences and she is just looking ill again because she is so thin. 
Other than that things are going well.  Although I usually thrive on routine, the summer break has been nice.  We still have Gabe on a pretty tight roiutine but have relaxed quite a bit with the girls.  We have even taught (err trained) the kids how to sleep in until 8:30 so that's nothing short of a miracle.  I am mostly all healed up from my surgery and get so excited everytime I go to Wal Mart and walk past the tampon isle and realize I will never need another one of those as long as I live.  That is something worth celebrating.  If you see Tampax stock take a dive it's because they know I am no longer buying 2 boxes a month to keep up with my henious periods.  I have 2 more weeks until I am supposedly 100% back to normal.  I look forward to that!  By the way, blogger's spell check is not working and I refuse to do it so deal with my typing errors- I can spell but my typing leaves something to be desired in the accuracy department.

Isn't this guy adorable?  Every now and then he and I get to go out alone and he sits in his car seat and smiles the whole time.  He is not a fan of sharing me.

Consider The Bird

There has been a lot of stuff that has happened the past few weeks.  There are good things and I am really trying to focus on them although it is hard.  Carly won the Wildcat Pride All Year award at school.  She also participated in the school talent show with her friend Taylor.  Given her anxiety issues that was nothing short of miraculous.  They did great and when I am home I will have to post the video.  The girls wrote and sang their own song.  They won 2nd place in the people's choice part of the talent show.  I am so proud of all she is doing!  That is the positive- now for the rest.  My surgery went well but was way more painful then I could have expected.  I had thought I would just be up and going in no time but I was so wrong.  I am now 2 weeks out and doing well.  I still have a little pain but it is tolerable.  I do not think all of the added stress is helping me to heal.  I still can't take a bath (don't worry, I do shower) and I still can't lift much.  The not lifting has been hard because of Gabe.  We had to put one of our dogs to sleep last week too.  Just another added bonus to the crapstorm.  He had been rapidly losing weight over a couple of weeks and we took him to the vet and he was in complete kidney failure.  He also had heartworms but they would have been treatable had the kidneys been ok.  We miss him but know he is better off.  Then there is Anna.  God bless her little soul.  Sunday morning she just wasn't being herself and would not eat.  She began to run fever and vomit.  She ran fever all night of 103-104 that would not come down with Tylenol and Motrin.  I fed her Gatorade through a syringe all night just to try to keep her hydrated.  The next morning her fever was pretty much gone but she was still vomiting and refusing to take her meds so I took her to the ER where I work.  They were able to get her meds down her and decided it was just a virus.  She did not vomit at the ER all day but as soon as we got home she started vomiting again.  I was up most of the night with her again- not from vimiting but because she was acting delirious.  I was hoping the worst was over and then she woke up vomiting again.  I decided that this was not a virus and so off we went to see our pediatrician, Dr. Goff.  He was concerned and felt she needed a work up and sent us to the Cook's ER.  We got here and Anna was, surprise, dehydrated.  By the time we arrived it had been over 24 hours since she had urinated.  They started her IV and after 1.5 liters of fluid she finally started urinating.  They then gave her a Gatorade which she drank and did well with.  We finally got out of the ER and to her hospital room that night and she ate a little jello and took her meds and then proceeded to throw all of that up.  After that they said she could not have anything else by mouth except her medicine.  All day yesterday she just got IV fluids and then today she was given a clear liquid diet.  She drank a sip or 2 of juice but refuses to eat anything because she does not want to "puke up."  OK- so none of this sounds too bad, right?  We are on day 5 now with no answers.  I am certain this is gastroparesis (delayed gastric emptying) which we have dealt with in the past.  The cure for her is pretty easy- pyloric balloon dilation done via EGD.  The problem- Anna's regular GI doctor is not on this week and we are having to deal with this Dr who I cannot stand.  She spent all of 20 seconds with us yesterday and decided her big and brilliant plan was to do NOTHING.  She said we need to give Anna gut rest.  Um hello lady, what the hell do you think we have been doing?  She is insisting that this is just a virus that needs to run its course but then in the next breath she talks about gastroparesis brought on by a virus.  She is refusing to do an EGD (scope) until at least tomorrow if even then.  She was the coldest Dr. I have ever met who was completely dismissive of any and everything I had to say.  I talked to the nurse yesterday about my dislike for her and was told that there wasn't really another choice right now.  I grew more and more frustrated.  This morning the nurse practitioner came by and I pretty much had a crying melt down.  I am so tired of them chasing rabbit trails when I know what is wrong and what needs to be done.  They want to wait and see if she throws up today and then do this test and that test and see if she has gastroparesis.  Surprise idiots, we already have established that diagnosis.  This is not a virus.  It may have started that way but it is not that anymore and hasn't been since the first day.  When I said to the Dr that this is exactly how she was before when she had gastroparesis she looked at me and said, "I'll take that into consideration."  I felt like giving her the bird and telling her to take that into consideration.  In the mean time my child is miserable and I am growing more and more frustrated and angry and nothing is being done.  Anna is hydrated but otherwise no different than she was when we started.   The nurses are in agreement with me and are trying to help us today in all ways that they can.  They sent the patient rep into talk to me and I had another melt down.  They are trying to get Anna's regular doctor to swing by and see us today.  I know I am not doing a good job of explaining things on here but there is just too much to tell and the bottom line is that I can't stand doctors who do not listen to a parents.  Then they had the nerve to say to me, "well, we don't want to have to do anything unnecessary to her."  That really pissed me off- as if I do want to do unnecessary things.   I don't want unnecessary things, I just want my kid to get better and sitting here doing nothing is not accomplishing that.  The hospital staff has been great but that Dr. has got to go.  She needs to retire!  Well, I need to get off of here.  Please keep Anna in your prayers and also pray that Dr. Ogunmola will come see us so that we no longer have to deal with Dr. Hunt. 

Sucker Punch: The Sequel

I got a call from the PhD today who did Anna's neuropsych testing.  She went over the report with me for about 30 minutes.  I might have heard 1/10 of what she said.  Luckily, I will get an official copy of the report and recommendations in the mail.  If we had to depend on my memory at this point we would be screwed.  She has what is called Cognitive Disorder NOS (not otherwise specified) which includes deficits in expressive language, receptive language, visual motor, visual spatial, fine motor, short term memory, working memory, and executive functioning.  I was doing OK through all of that.  Then she got to the next part- borderline intellectual functioning.  That is just about where my mind and body went numb and I didn't really hear much else except about setting up a trust fund for when she gets older.  My heart is officially broken.  Don't get me wrong, it doesn't change anything about the way I feel about Anna or the love I have for Anna.  Anna is still the most amazing little spit fire I have ever met.  It just hurt like hell to hear that and to really think about the struggles she will face.  My friend Nikkole said it best- I can talk about my child's delays and problems all day long on and in MY terms and it is OK.  It is the terms of others that tears me up.  The PhD did say some positive things about her fluid reasoning skills and that can be an indicator of good things to come.  The report also comes with a long list of recommendations for us and for the school.  Could I tell you what any of them are?  Nope, not right now.  I tried to talk to Kenneth about it but that was pretty much a dead end.  I am not trashing him, I'm just being really honest.  He refuses to show any emotion about Anna's problems.  I have said before that is a good thing and sometimes it is.  But I think every now and then it would be nice to know that he has some emotion about it instead of just acting like everything is fine.  Everything is not fine and quite frankly I'm getting really tired and weary from feeling like I'm carrying this all by myself. 

Before that disturbing phone call I had a meeting with the dyslexia specialist at Carly's school.  They got all of her testing done and surprise- she has dyslexia.  We had been told before she had it but they couldn't officially test until the end of 2nd grade.  She will be with the specialist for 50 minutes 4 days a week starting next school year.  I have already seen great strides since January when she started working with the specialist and I am so glad she will be getting the help she needs.  The funny part?  Her IQ score was very high and therefore she qualifies for the gifted and talented program.  Yep- special ed and gifted and talented program all in one child.  I am so proud of her and the great gains she has made this school year!

I went to the Dr this afternoon for some problems I've been having and found out I will be having a hysterectomy tomorrow morning.  It has been a whirlwind kind of day.  I am exhausted- emotionally and physically.  Add to that that my husband has strep throat (the man version which is WAY worse than any woman version could ever be) and so he has been a real ball of joy.  I love him dearly but really, this whole whining pathetic thing has got to stop.

These are only a few of the highlights from this most splendid day!  So please, if you have any spare prayers this girl could really use them because I feel like I'm about to break!

Help Me Help Others

As you have probably figured out if you have read any of this blog, our lives were turned upside down by preeclampsia.  Please help us to reach our team goal of $350 by this coming Sunday, May 20th.  The money goes to support the Preeclampsia Foundation which provides support, resources, and research about preeclampsia and other hypertensive disorders of pregnancy.  I would love to know that sometime in the future other families will not have to worry about the effects of this disease.