10 weeks post op :)

Swingset cruising

Any chance Iz gets, she is standing.  Sometimes it is hard to believe that just a short time ago she couldn't do anything and now here she is, trying every day to stand up and walk.  She crawled to the swingset today, pulled herself up and was cruising along the crossbeams :p  She has been trying to stand up without holding onto anything, too, but she just manages to do some downward dog yoga poses and then tips over :p

S is enjoying his time off school--there has been a whole lot of playing outside and video games with Grandpa and listening to mom read :p  In a few weeks he starts his summer program at school--he got a scholarship to go to a summer day camp at his school.  Half fun camp stuff, half school-type stuff to help him retain what he learned last year and maybe even get a little further ahead.  It took nearly the entire school year to get his IEP in place and he missed a lot of learning during that time. I still can hardly believe what a huge difference the IEP made for him--when it was put into place, he stopped getting in trouble at school and he started doing well academically; his line graph for skills in all tracked subjects just went steadily up and either reached grade level or nearly grade level. Putting his IEP in place at home made homework so much less painful :p  Next year will be so much better!

And if I can get this to work, here is a bonus video :p

Who Knows Chicago?

So who out there is familiar with the Chicago area?  I have a little boy turning seven this summer and at some point we will be in Chicago and I want to take him out for a little treat.  We are thinking cupcakes--where are your favorite bakeries?  Are any of them more kid-friendly than others?  Reasonably priced or expensive but worth it?

Any must-see things while we are there (if we have time)?  So far, our must-do list includes Legoland, Science and Industry, and Navy Pier.  Our would-like-to list also includes the Field Museum and finding a great park (our kids do not think a vacation is complete without visiting at least one new and awesome park).  Any suggestions fit for a seven, three, and not-quite-one year old?

Our first CH visit

Today was our first visit to the Children's Hospital since Iz was released two months ago.  It was....stressful.  But it wasn't too bad and we made it through ;-)  We were there for this little guy:

His exam with the ENT showed that his ear drums do not move as much as they should--he has some fluid built up back there that the ped couldn't see.  He has a script for the next month to see if they can dry it up and if it is still there, we may need to consider tubes because they don't want fluid sitting there all the time muffling his hearing.  But he wants more failed hearing tests before we think about that (not that he wants more failed tests but you know what I mean :p).  We did a hearing test in the booth and his results were not within the normal range but the tech wasn't positive if it was hearing loss or "I don't want to."  We go back in one month to see how the fluid situation is and to try another hearing test.  If he still doesn't get a passing score on the hearing test, we will be set up to do a sedated probe hearing test and go from there.  If all goes well, his muffled hearing can be managed with meds until he outgrows it :)

Being cute is exhausting.....

I'll get to the post title in a moment--I wanted to start the post of with my crazy instead of ending with it ;)

Today, I feel sick.  That deep gnawing feeling of dread that tumbles around, over and over.  I shouldn't, in reality there is no reason for anxiety this swift or fierce.  I got a call from the Children's Hospital to set up an appointment for B with the ENT.  It is on a different floor from cardio or surgery or the PICU.  We will go no where near any of the areas associated with Izzy's surgery or pre-op or hospital stay.  And yet I am feeling such anxiety, much worse than I expected when I first learned B was being referred there, all over simply being in the same building.  I have the crazy.  It isn't as though only bad things happened there--when I walked out of the hospital with Iz in my arms, she was recovering and better.  She was more energetic, even with her new scars and pains and medications.  She was breathing better, her heart was working better, she was better.  And yet the days of fear and stress and tears override that moment and I dread going back for the first time.  It will be fine.  Each time will get easier.  Right?

Now onward to the cute!  Today was the last day of Vacation Bible School--only S is going this year (last year, too) because VBS starts at four years old and B just turned three.  Poor B, though--he loves Sunday School and every day at check-in he asks for his arm band so he can join in and we have to tell him no.

Iz was in fine form this morning and apparently just having people come up and tell you you are cute is exhausting.  Perhaps her smiling and bobbing around to get the people to ooh and aah over her even more had something to do with it :)  When we got home, she was soon passed out:

 

Being Cute is Exhausting

Because it was the last day of VBS, there was a family picnic in the evening.  Last day is also water slide day--they make a huge water slide down a hill behind the church for the kids during VBS and for everyone during the picnic.  As soon as we were done eating, S was off and spent his time standing in line, sliding down, standing in line, sliding down, as many times as he could until it was time to go :)  It was very hot out so I was trying to keep Iz in the shade so we didn't make the trek out to the water slide to get pictures :/  

B is still too young to go down the water slide (its big and steep) but there was fun to be had for him as well!  He went in a bouncy house for the second time in his short life ;)  The first time we took him to a bouncy house, he was too scared to go in--by the time he worked up the courage, it was time to go.  Tonight, however, he had no fear, climbed right in and had a blast.

 

Bouncy Fun

By the time we got home, I had three hot and sweaty kids (Iz worked up a sweat being cute, of course).  Before bath time, I tried to snap a few shots of Iz for the plain and simple fact that her outfit got so many comments tonight LOL  Thought I should document it.  I got a lot of very blurry pics of her trying to stand on the chair, trying to roll onto her stomach, trying to jump up and down.  You get the picture.  The best two of the bunch:

 

 

Can't stop moving

After splashing up a storm for Iz, some Thomas the Tank bath toy play for B, and a bubble bath for S, all fell asleep rather quickly and the house is quiet.  Perhaps Iz is even tired enough to sleep soundly and we won't be woken by any nightmares tonight :)

Testing II

Now let's see if I can get pics off my phone...

Testing

Lets see if this works to get pics off the IPAD :p

9 Month Well Child Check

I was so dreading this visit :p I dread all dr's visits now--always expecting bad news..... But things were fine. Iz is up to 17 pounds 1.4 ounces, she has hit all the milestones the ped was looking for, her lungs and heart sound good and there is still no murmur (yay!) so the ped thinks that there is no leakage around the patch :) Or at least if there is, it is minor enough not to sound like anything ;)

While we were there, she also checked out my Busy Little B's ears, again. He has not been able to pass the hearing test through Early Intervention and they have tried once a month for a while now. At first we thought it may have been due to the ear infection he had the month before his first hearing test but the next month, he still failed. Last month I took him to the ped, she checked him out and made sure his ears were all clear and EI did the hearing test again. Failed. So the ped is referring him to the Children's Hospital to get a more in-depth hearing test.

I have mixed feelings about this. Not that I don't want him to get his hearing checked--I do! If there is a problem, I want to know so we can treat it (and if there isn't, I also want to know so I don't have to worry about it). But going to the Children's Hospital makes me nervous, anxious, a little scared. Its completely irrational, I know. After all, they gave Iz back her quality of life. They fixed her. She is doing so great and is happy and growing and awesome. But the CH is also filled with tears and fear and panic and very dark moments. At the moment, the dark places are winning. Keep reminding me of all the good there is, too, so when it comes time to take B I won't be a basket case ;0)

I should have charged the laptop earlier--I have some nice photos of the kids from our walk today that I would like to post. Perhaps I will have time tomorrow if I can convince the kidlets to both nap at the same time (which happens almost never). Last day of school for S! Summertime has arrived :D

Will there come a day when I am not so nervous?

Iz has a doctor's appointment tomorrow. Just her nine month well check. Height, weight, milestone checklist. No biggie, right? Then why do I fell so sick to my stomach? Why am I waiting for the bad news? Why am I so nervous about a perfectly ordinary well baby visit? I wonder if the day will come when taking her to a doctor is no big deal, just another stop along the way? Or will each visit bring that breathless feeling? Will she be fifty years old and I wait by the phone, worried, until she calls me and says she got another ok? (or at least I hope she wants to call me.....I have a feeling I will worry about this daughter of mine and her heart til the day I die.....)

Rest in Peace, Baby Rowan. Thoughts and prayers to your family as they mourn the loss of their beautiful heart baby.

So much to be proud of.....

The past couple of days, my little kidlets have given me so much to be proud of :)

I think Iz's accomplishments go without saying ;) Catching up physically, always trying new things, being so excited to learn new skills, learning how to wave and say "bye-bye", having opinions about things, growing and growing and growing :)

B had an awesome day on Wednesday--I mentioned last post that we toured his preschool for next fall :) We got to meet his teacher and spend some time in the classroom and meet some of the students who will return next fall (and some who are graduating and moving on to kinder). He was very very shy at first but he wanted to participate so bad :) Since PT was evaluating Iz, I was free to hold his hand and walk with him as he tried out the obstacle course in the gym with the other students. He had fun and soon forgot that he needed me and did it all on his own ;) One thing he has struggled with during playgroup is circle time--he doesn't want to sit, doesn't want to participate, he just wants to do his own thing. He did awesome at preschool! He insisted on sitting next to me but he did sit and he sort of participated when he thought no one was looking ;) He tried to get up once or twice when other students did but for the most part he did great. I can't wait to see how he responds to speech therapy next year while he is at preschool :)

S has been having a great few months--ever since his IEP was put in place, he has been on green every day, he is getting assignments and homework done, he reads so much better, and his academic progress is better and better. He had a field trip to the zoo yesterday and my cousin took him--the last time she took him to the zoo, they had to leave early because he was throwing tantrums and not listening. Yesterday, they had a great day--he listened, he obeyed, he had fun :) The "sensory diet" the occupational therapist recommended really makes a big difference in his ability to calm himself.

We have our rough patches but overall, life is grand :)

What a difference a day makes......

Just about two weeks ago, EI came out to do another evaluation on Iz. She scored about 4 or 5 months in most gross and fine motor skills. She couldn't sit up, she couldn't crawl, she had a very weak unsteady grasp. We filled out the paperwork and set up an appointment with the physical therapist for an eval. Within a few days, she learned how to put herself into a sitting position (tripod). Few days later, she was able to lift her arms up for short periods and hold herself steady. She started trying to crawl and fell a lot ;)

On Wednesday, we were at the school touring the preschool class B will be in next fall--the physical therapist was there and asked if it was ok to evaluate Iz then instead of waiting for Friday (today). Iz crawled! Very first time making it more than a pace or two without falling over :p She took off across the room :) PT cleared her as being "age appropriate"--that girl of mine was determined to get caught up as quickly as possible. On Thursday, just one day after figuring out this craawling thing, I caught her standing up. She was hanging on for dear life but she was up and dancing to the music ;)

She may have been taking a break while she was waiting for surgery but now watch out, world, Baby I is ready to do it all =)