Thursday, May 31, 2012

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. 

Wednesday, May 16, 2012

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!

Monday, May 14, 2012

Help Me Help Others

Support me in the Promise Walk for Preeclampsia

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.

Sunday, May 6, 2012

Teary Eyed But Still In Love

I did it and I survived it, barely.  I made it to the dreaded and feared ARD (or IEP as it is called in some states) meeting for Anna.  I am OK with the IEP itself but still sickened by the results of the testing they did.  I had heard some of it over the phone but got the official report in writing and it just brings me down.  Way down!  It just never gets easier to hear things.  Our neurologist had warned us some time ago that as Anna got older the gap would widen and we would really begin to see where her problems and delays were.  I think I've talked about that before in some other post.  As kids are expected to do more there is also room for them to not do more.  My eyes welled up with tears during the meeting as I sat there and heard "Cognition- delayed, Motor Development- delayed, Language- delayed, Social Skills- delayed, Self-care- delayed...indicating poor functioning relative to individuals of the same age."  They scored her overall between the 7-8%.  She had private neuropsych testing done last week and we should have those results in 2-3 weeks.  I will be interested to see if they are about the same.  The school's current plan is to mainstream her in pre-k next school year and provide support as needed.  They will kind of wait and see how she does in the classroom and then add the services as the teacher identifies more problem areas.  They will have speech and OT come and see her at least weekly and make classroom adaptations as needed.  I am OK with this.  I think as she gets with other kids she is either going to take off and make great progress and won't need a ton of services or she will really struggle and we will easily identify what she needs.  She is qualified for services so adding them will not be a huge deal.  So I've really been struggling with those results and have felt really down again and kind of angry, too.  I really thought I was past the anger and had achieved true forgiveness but I guess it is quite apparent that I am human and I am struggling again.  Kenneth is such a man.  He looks at the results and says,"Well, we can only go up from here."  That was it.  I love him so much and am actually thankful that he doesn't get emotional because 1 of us needs to stay sane.  He is just very matter of fact about everything with Anna.  I could go on forever about the anger that has been stirred back up but it just stems from knowing things didn't have to be this way but I know that's a whole other post.

 Kenneth and I celebrated our 10 year wedding anniversary on Friday.  We didn't do anything special which actually made it really special.  We just stayed home, played with the kids, enjoyed a great dinner, watched a beautiful storm, and watched Carly make shadow puppets on the wall as the electricity flickered off and on.  Just being home and really enjoying each other's company was all I wanted.  We weren't rushed or preoccupied.  We were just enjoying the fruits that 10 years of marriage have given us and that to me is quite special!

Here's one from our early days