Head Growth=Brain Growth

Yesterday, Isabella had her regular monthly appointment in Kansas City. We went over to Crown Center for lunch and ate with Micah, Gracie and sweet, little Kinsley. I got in as much snuggle time with Kinsley as I could before we had to head over to the hospital for our appointment. We actually saw Dr. Gratny this time. We have not gotten to see her since we came home from our second open heart. Let me tell you, Dr. Gratny was more than pleased with Isabella's progress. She just could not say enough good things about how Isabella is doing. Her head has grown quite a bit since her last visit. This is REALLY good news because since she suffered her brain injury, she has not had much head growth which means not much brain growth. She was also very pleased with her quickness at reaching some milestones over the last few months. She said her muscles have good tone which is something that indicates her brain is healing. Typically with brain injury, they are very rigid and sometimes even with meds it does not help. She got to watch as I picked up Isabella and Isabella turned into me and snuggled. She said that was a good sign. She said to be honest, she really was starting to worry that Isabella was not going to progress and that she was never going to have REAL purposeful interaction. She is now convinced that Isabella has the potential to keep moving forward. She said we were going a great job and to just keep doing what we are doing. They lowered her breathing rate down to 10 on her vent. She is now on the lowest settings. We are to be taking her off the vent several times a day and we are to try and keep her off as long as she can tolerate. So we are officially in the weaning process. She is doing so good that she does not have to go back for 6 weeks. So we will go back up right after the 4th of July and we will see Dr. Gratny and she will also go and get her eyes checked to see if she can "see" well enough for glasses. It depends on how much her cortical vision has healed. She needs glasses, but if her brain can't process an image then glasses are pointless. So we will see. I personally think her sight is getting better with each passing day. She is actually starting to respond to visual threat and she seems to focus better. So anyways, we will continue therapy weekly and she will go to see her cardiologist in Joplin next month for a follow-up echo. So good news all around. All I can really say is Praise God!!!

New Discovery

We have been going to therapy once a week, and one thing they have been working with Bella on is perception of body parts. You and I know we have legs without even looking, but Bella doesn't quite get it. So we have been having her touch her legs and her toes. We have even been having her put her toes in her mouth. Well today, she actually held onto her foot and played with it. It was so cute!! She was like "hey where did this come from??"

She is cutting her molars right now and has not been a very happy baby. She has been doing better about rolling. She doesn't do it one motion. She either goes from back to side or from side to stomach. She is scooting on her back really well now also. She is trying so hard to sit up. If she is laying on her back with her head propped on a pillow, she will just about get herself sat up. You can tell she really wants to, she just doesn't quite have the strength yet. So she has the "want to" and in my eyes that is a big step. You can just tell she is wanting to go somewhere!! And I think she will....SOON!!

The Weekend

Bella is getting to be such a big girl. I can't believe how much hair she has now. She is off the vent for 1 hour a day. She stayed at 100% spo2 on room air while off the vent yesterday. She just gets tired of breathing on her own because she needs to build up more muscles.
She had PT and speech therapy today. She swallowed for the speech therapist and showed lots of promise to be able to eat by mouth in the near future. PT is also very impressed with her. She was awake the whole time and she kept her head held up for all of her session. She did so good and I was just so proud of her!!
Her scars are starting to fade again. I think they look pretty good.

Abby at her first t-ball game of the season. She hit the ball really well. She was the last batter, so she had to run all of the bases (I guess that is how they do it in t-ball) Anyways, she was really confused!!
My little girl running.
Isn't she cute!!

So we are going to FINALLY pour the rest of our concrete tomorrow. So hopefully the building project is about to take off again. Keep your fingers crossed.

Poem

I found this poem and thought I would share it. I am sure some of you have seen it. It really spoke to me and really explains how I feel practically everyday. Heart moms everywhere I am sure can relate.

The Day I Became a Heart Mother
One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.
I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!
Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
I will accept our fate.
When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns her wings,
I run to my child's bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she is here,
but my heart begs, "PLEASE let her stay"!
From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will she be alright?", to watching her reach out her hands.
With every smile my heart just melts,
despite life's harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to her beautiful heart).
God must have known how much I'd love her (Just as He loved her from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".
- Author Unknown

WELCOME BABY KINSLEY

BEAUTIFUL BABY KINSLEY ARRIVED TODAY AT 12:20 P.M. CONGRATS TO MICAH AND JASON ON YOUR NEW ADDITION. SHE IS LOVELY. http://gabrielesheridan.blogspot.com

A Party Fit for a Couple of Rock Stars

today we did the girls' b-day party. It was Hannah Montana. They had a great time. We did a BBQ along with cupcakes, cookies, pinata and lots of presents. It was fit for a rock star!! I spent lots of time and effort making the pinata, so I have to say I was a little sad when they beat it apart :( Oh well!! Also on another note, Bella is rolling from back to side and side to stomach. So well, she is rolling over!! She is all over the place scooting on her back. You can tell she just wants to go somewhere.

The Table. Yes I did it all myself!! (I have way to much time on my hands). Christina, I know you are seeing this and so proud of my cookies!!
More of the cookies and see my pinata!!
The birthday girls.
Maddy hitting at the pinata
Abby giving it a whack

Wow a princess tent!! Thanks Grandma!!

One of Bella for good measure

I don't know what she was so excited about.

Oh my a Hannah Montana Guitar!!

Okay, don't look but here comes the big gifts

Wow!! New bikes!!

Abby has already wrecked hers and skinned up her knee :(

Maddy. Matt insisted on putting horns on them. Thanks Honey!!

Heart Broken

I can't believe it....Little Ava Rae Boeckman passed away this afternoon. We are so heart broken for Amy and Nate right now. She was a little fighter and a special little girl. I feel so lucky to have met and gotten to spend time with little Ava. You will be missed.
January 31, 2008-May 7, 2008
http://kadenboeckman.blogspot.com/

Birthday Parties, Garage Sales, Circus Fun and then a Car Wreck to Top the Week Off!!

This is Bella and Nurse Becky on Monday at Children's Mercy. As you can see, Becky is very excited to see Bella!!
Micah getting to hold Bella for the first time. Micah has known Bella for just about one year now, but has never gotten to hold her.
Mimi Best came over to hand out birthday gifts and she got a chance to hold little Miss Bella Boo. Bella was off the vent at the this time. She is staying off for about 20-30 minutes two times a day.
My baby girl is three. I can't believe Maddy turned three on Thursday. She is getting so big. We took her and Abby to the circus that night. It was awful!! The kids liked it but Matt and I thought it was a bit of a joke.
Hayden giving Bella smooches. Hayden turned one, and we went to celebrate her birthday Friday night. She loves Bella!! Bella showed off for everyone and just talked and talked. She is started to make sounds of oooh, aaah and la la la.

So Saturday we had our garage sale. We did okay considering I marked everything REALLY cheap. We made $147.00 for Miracles Happen. Better than nothing.
Then this morning, my sister called me and she was crying. She and her new husband had been in a wreck after coming home from breakfast. My sister was driving and she came up on a really blocked intersection and they got T-boned by another car. The other car did a few flips but everyone was okay. Both vehicles were totalled. They took my sis by ambulance but her husband refused to go by ambulance. My parents and I met them in the ER. They are both okay just really banged up. Erin can't see because she lost her glasses in the wreck. She also lost her set of keys. Who knows what happened to all of that. Her husband had a dislocated shoulder. The sheriff deputy said they were really lucky!! So they are home resting. I don't know when Erin will be able to come back to work. So until then, it is just Bella and I. We will probably have to reschedule her therapy session this week because I can't take her by myself. I am just so thankful that they are okay!!!! LOVE YOU SIS, GET BETTER SOON!!!

We are finally going to pour concrete tomorrow!! And that is about it in our lives. Nothing too exciting, right? :)