She's not going to be happy....

Tomorrow I have to take Kira to have a blood draw done....she's NOT going to be happy with me at all. I do believe there will be an icecream bribe tomorrow!

I know the minute that she sees the parking ramp at the hospital, she'll know something is up. Once we are in line with our lab sheet, she'll start asking, "Why are we doing this?" over and over and over. Then we'll have to walk around while we wait for our pager to go off...more questions while I try my hardest to distract her......

Then the pager will go off and so will Kira! :-)

Atleast I know what to expect, right????

My boy.....

He's a little climber and even when he KNOWS he shouldn't be there that little grin.....

He's a loving big brother who adores his baby sister!! (And of course, Kira too!)

And he's a little goofball!!!......I just love him!

I can't believe in less than a month my little boy will be 3 years old! He reminds me a lot my brother when he was little....like Jer, he can't WALK anywhere...we run, hop, jump but don't walk. He is so funny! He keeps us laughing every since day. I can't lie...he has a terrible temper when things don't go his way and that temper gets him in trouble from time to time but then as soon as he "fit" is over, he wants cuddles. He hates it when he knows you're upset with him. He loves to "rocka-rocka!" If there's a rocking chair around, he'll find it. We're potty training which has been an adventure but he's getting there. He's excited about starting preschool this fall...can't wait and talks about it everyday. Mommy is excited for the fun he'll have but a little sad to let go and let him go. (Dylan in preschool and Kira in kinder. this fall....Mama might be a little emotional!)

I just love my boy!!

Special needs.....

I have gotten this in many forms over the years but I love it...especially the last 2 lines.

* You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.

* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)

* You fired at least 3 pediatricians and can teach your family doctor a thing or two.

* Everything is an educational opportunity instead of just having plain old fun.

* The clothes your infant wore last fall still fit her this fall.

* You view toys as “therapy”.

* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that’s speech therapy), smear ketchup all over their high chair (that’s OT), or throw their toys (that’s PT).

* You also don’t mind if your child goes through the house tooting on a tin whistle.

* You compare ER’s instead of grocery stores.

* You have been told you are in “denial” by at least 3 medical or therapy professionals. This makes you laugh!

* You have the incredible sinking feeling that you’ve forgotten SOMETHING on those few days that you don’t have some sort of appointment somewhere!

* You get irritated when friends with healthy kids complain about ONE sleepless night when they’re child is ill.

* Your vocabulary consists of all the letters OT, PT, SP, ADS, VDS, IFSP, etc.

* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with…you waited 8 months to get it…and besides, no one else will be there!

* Fighting and wrestling with siblings is considered PT.

* Speech therapy occurs in the tub with a sibling.

* You discuss your child’s oxygen saturations with other moms.

* When potty training is complete, you take out a full-page public notice in the Washington Post.

* The Doctors/Specialists/Hospitals etc. all know you by your name without referring to your chart.

* You keep a daily growth chart.

* You phone all your friends when your child sits up for the first time, at age two.

* With a big smile on your face you tell a stranger that your four year old child just started walking last week.

* Her medical file is several inches thick and growing.

* You never take a new day for granted.

* You have a new belief…that angels live with us on earth.

USDF, The Advocate, October 2007

I have a child with special needs. Somedays are harder than others but in the end, I have an angel who I wouldn't trade for the world! I love my girl!

She's in there...my sweet girl is still in there!

WHEW! I think the combo of meds we have Kira on are working!!!!!!!!!!!!!!!!!! It's not perfect but I'm seeing signs that the meds are doing what they are supposed to be doing. Praise the Lord!

We did learn a very important lesson this weekend about the Risperdal that we started her one last Tuesday. We were told that it was very important that we give it at the same time each day and not forget...well, we forgot. Uh-oh! We had family in town for Eva's baptism and went to the hotel so the kids could swim. As we pulled into the parking lot, I realized that, oops, I had forgotten to give her med or atleast bring it with. Well, all was well until about 2 hours after she should have had it......she was out of control! It was terrible and thank goodness we were already on our way out the door. Lesson learned! I am buying a 2nd pill splitter this week and carrying that a couple of her pills in my purse so this will never happen again. We will increase her dose from 1x a day to 2x a day tomorrow. We are praying that it doesn't make her sleepy by giving it in the morning and at night....we don't want her sleepy during the day!

That was a big punch in the gut....

I'm sitting here tonight at 10:00 PM, feeling like I got punched in the gut today. Kira had an appt with a pulmonogist....and to be honest, I felt like it was pretty crazy that we got the referral but I went along with it because a couple of doctors had recommended it. And because of her Congential Fiber-Type Disproption, I knew it was a good idea to rule out any problems. I honestly, seriously, 120% figured we would be in the door and back out with me saying, "That was a waste of time." Guess Mommy gut was wrong on this one?

The dr was very nice but as soon as she walked in she asked if Kira always had the dark circles under her eyes? Yes. Does she wake up saying she's tired even after 10 hours or so? Yes. Has anyone every mentioned that her left ribcage is lower than her right? Ummmm, no? When she gets a cold does she always have the croup sounding cough? Yes. Does the Albuterol with the nebulizer work? No, not really? Does she snore? Yes. Does she wake up coughing? Sometimes. Tell me more about her reflux as a baby. Tell me more about her surgeries. In the back of my mind, I don't like how the appt is going at all.

Kira was a champ. She did great for the whole appt. Not one tear or anything so I guess the anxiety meds really are making a difference but let's see how good they really are working when she has to go through sleep study with freaking electrodes all over while spending the night in the hospital. Crap. The pulm is concerned that she may not be breathing deeply enough when she sleeps which can cause too much carbon dioxide to build up and not enough oxygen...or something like that. Too be honest, I was so shocked that we had "issues" I couldn't concentrate. She also wants to rule out apnea....um, folks we've walked that road when she was an infant and finding your child blue and not breathing is not something you want to relive...EVER! So we should get a call next week to schedule it and I just hope that we can get in and get it done BEFORE school starts and I'm not going to go into the "what ifs" if something does show up with the sleep study.

We also left with an Aero Chamber....and prescriptions for Flovant and Albuterol that we are to use the minute she shows signs of a cold to see if we can keep it from lasting all winter like last year. Chances are we'll end up giving Flovant to her 2x everyday all winter if it works....more junk to load her up on. I'm trying to think of the positive because I don't want her to miss school from being sick all the time and kids with CFTD get in the cycle of getting run down, getting sick, staying run down and not getting "over it" for several months. We need to avoid that if at all possible.

I think a lot of my "shock" is from the fact that not a lot is known about CFTD yet...it's new to be able to dx it and they are learning more from kids who have it everyday. Learning is good but it's also scary when your kid is the one who has the "it" that there is so much unknown about. Before we had a dx, the "unknown" was scary because you can't fight a ghost.....but even now with a dx, we're still fighting the "unknown" in a lot of ways.

Breathing issues scare the crap out me...they terrify me. And now I know sleep is going to be hard to come by because I'm going to be keeping one ear open listening for Kira...heck, I already put a monitor in her room tonight. (It's hiding because I know she wouldn't want it there!)

But for now, I need to put on my happy face for the weekend. It's Eva's baptism and we have a houseful of people coming. Distractions are good......

Relief along with feeling a little sad....

But I finally feel like someone "gets it!" I feel like someone listened to Jason and I. I feel like someone could see past what the anxiety and fear does and saw what we see...a loving 5 1/2 year old who doesn't want to be "naughty".....who doesn't want to be fearful about life....who needed someone to help. I feel hope.

I left our appointment with the behavioral ped today with tears in my eyes. Not only did Kira do amazingly well but this dr didn't make us feel like we were "doing it wrong." She didn't make us feel like WE did this but choices we made in the past. We have a plan. Kira has been on prozac for about a month now. We were seeing improvement with her anxiety but we were also seeing a lot of other behaviors that we knew were caused by the med and not things that would work to "trade" for less anxiety. There is a word for what we were seeing.....Disinhibition! Although this is not a common problem with the SSRI medications, it is very troubling to parents when it occurs. (Ummm, yeah!) Children who become "dis-inhibited" when on the SRRI meds have an "I don't care" attitude. Rules and expectations that were followed previously are now ignored. This behavior is striking when it occurs. (ummm, yeah and it freaks parents out too!)

Since we were seeing improvement in a lot of areas, we decided to not increase the dose anymore at this time but to stay on it and add another med. While I'm not crazy about adding more meds to her system, I also know that it's what she needs to function. So we are adding another med called Risperidone. Like the other, we have to start out slowly and gradually increase as needed and hope that this med will help control the "not so pleasant" behaviors we have been seeing.

We are hoping that this combination will work and we can get everything to a good dose before school starts so that hopefully, that transition will go a little more smoothly for Kira.

At the end of the day, Kira is Kira. We'll keep working to find what works for her. As her Mommy, I just want things to be easy. Isn't that what every parent wants? I would be lying if I said that I haven't been asking the "why me" and "why us?" question alot lately but I always come back to the same answer...."Why NOT me? Why NOT us?" So as we walk down yet another unknown road, I just hope and pray that we can muddle through and come out in a good place at the end. We will....I know we will.

Nervous....

You would think after all the doctor appts we have had with Kira, I wouldn't get so nervous I feel like I could sick anymore but that's EXACTLY how I feel this morning. We are walking into a whole new "territory" and I'm so stinkin' nervous. We're seeing the behavioral ped today and need some help. The current med that Kira is on seems to be helping with her anxiety (YAH!) but it has also opened up a whole new set of problems with Kira....so clearly, it's not the one that she can stay on.

Hoping for a new direction today...our whole family need it!