Ava Rae Boeckman 1/31/08-5/7/08
Saturday, January 31, 2009
Monday, January 26, 2009
So, it doesn't seem like there is enough time for me to get on here and post. Sorry for being such a slacker!! Bella is doing great. She is continuing off the vent 4-6 hours a day. Sometimes it is more, depending on how much snot we have to deal with. She is able to bear weight on her legs as long as you support her trunk. She spends lots of time playing with her toys. She scoots all over the place. The other day she scooted herself until she was completely up under the ottoman. Everything and everyone is just hilarious to her. She is always smiling and laughing. She can sure turn a bad mood into a good mood really quick with her presence. She is such a special little girl.
The house is coming along. I am hoping and praying it is done before the baby gets here. We are going Friday to pick out carpet and paint.
Matt has so far been able to hold onto his job, but it looks like it won't be for much longer. He as a meeting Wed. They just don't have the work right now. They build stuff like bridge overhangs and other road things??? ( I'm Not really sure what they do!!) Anyways they have pending orders but no real orders. All the pending orders are if Obama gives businesses the stimulus package. So we will see. It is in God's hands and we will deal with whatever comes our way.
I am so excited about the baby!!! I feel her kicking and swimming around in there all the time. She is quite active. My sister and Matt's sister Steph have both also got to feel her kick. I think she is going to be a big baby. I am already about the size I was at 9mo with Bella. We still do not have a name picked out. In fact we probably won't name her until she gets here. Maddy wants to name her coleslaw. Abby wants to name her Sella (is that really a name?)
The batteries on my camera are dead so I need to recharge and then I will post some pics on here.
The house is coming along. I am hoping and praying it is done before the baby gets here. We are going Friday to pick out carpet and paint.
Matt has so far been able to hold onto his job, but it looks like it won't be for much longer. He as a meeting Wed. They just don't have the work right now. They build stuff like bridge overhangs and other road things??? ( I'm Not really sure what they do!!) Anyways they have pending orders but no real orders. All the pending orders are if Obama gives businesses the stimulus package. So we will see. It is in God's hands and we will deal with whatever comes our way.
I am so excited about the baby!!! I feel her kicking and swimming around in there all the time. She is quite active. My sister and Matt's sister Steph have both also got to feel her kick. I think she is going to be a big baby. I am already about the size I was at 9mo with Bella. We still do not have a name picked out. In fact we probably won't name her until she gets here. Maddy wants to name her coleslaw. Abby wants to name her Sella (is that really a name?)
The batteries on my camera are dead so I need to recharge and then I will post some pics on here.
Monday, January 12, 2009
Thursday, January 8, 2009
We are starting some serious weaning off the vent
Isabella had an appointment in KC yesterday. The Dr. was so impressed with her, as always :) She is setting Isabella up with a humidifier mask to go over her trach when she is off the vent. This will help her wean much easier. The only thing holding her back from being off the vent is the fact that her secretions get thick when off the vent and she gets to coughing so much. This humidification system should help. We are now working on a goal of up to 12 hours a day. That means only needed ventilated at night. Her Dr. said she isn't really using the vent because she is overriding every breath so to speak. So basically in layman's terms, Isabella is ready to come off the vent at a very proactive rate!!!!!!! I think there is a good chance that she will only be on the vent at night by the time the baby gets here. Wouldn't that be great!!!
On another note, Isabella is not gaining weight as fast as they would like. We are increasing her formula volume to hopefully correct this problem.
We are meeting with PT at CMH in March so they can fit her with a stander (helps her bare weight through her legs) and a trunk vest (supports her trunk area to help her sit). Dr. Gratny really feels that the only reason Bella is not sitting on her own is because the upper muscles of her trunk are not quite as strong as they should be. This is a result from her hypoxic event (when she suffered the brain damage) She said she may or may not regain strength there. But the vest will help support her so she can sit up. All of her other muscles needed for sitting are nice and strong. She is ready, she just needs a little help.
So all in all it was a good day with lots of good news. We were released for 8 weeks, so that in itself says something!!
On another note, Isabella is not gaining weight as fast as they would like. We are increasing her formula volume to hopefully correct this problem.
We are meeting with PT at CMH in March so they can fit her with a stander (helps her bare weight through her legs) and a trunk vest (supports her trunk area to help her sit). Dr. Gratny really feels that the only reason Bella is not sitting on her own is because the upper muscles of her trunk are not quite as strong as they should be. This is a result from her hypoxic event (when she suffered the brain damage) She said she may or may not regain strength there. But the vest will help support her so she can sit up. All of her other muscles needed for sitting are nice and strong. She is ready, she just needs a little help.
So all in all it was a good day with lots of good news. We were released for 8 weeks, so that in itself says something!!
Sunday, January 4, 2009
Some Updates
I am working on making letters for the girl's rooms to go on their walls above their beds. This one is Bella's. I thought it turned out pretty cute. So these are going to be the colors used in Bella and the baby's room. I am getting ready to start on their quilts for their beds. 
So in case everyone forgot, yes we are still working on our new addition. It is coming along slowly but that is because Matt is doing it all, plus he works full time on night shift. But we have made lots of progress since I last posted pics. This is actually the hallway. I took these yesterday, but as of today, there are closets all down this wall. Also at the end of the hall you can see the entrance to our safe room. Then of course there is the back door that leads to my GIANT back porch!!
In this picture, I am standing in Bella's room facing mine and Matt's room. We have a half wall between the rooms so we are separated but not totally separated. The part of the wall you see with the big rectangle is the only thing that separates our rooms. The big rectangle is actually where are big fish tank is going. It is built right into the wall, and you will be able to see it from both rooms. Pretty cool, huh?
This is Bella and Baby's room. This picture is their closet and the place that is going to be the window seat. Matt is building flip top lids on them so we can use them as extra storage. Our new room will also have a window seat. Eventually these will be the kids rooms (when Bella and the baby get older.) So for now, Abby and Maddy are actually going to get the Master bedroom. I can't wait until we are done!!!! I am ready to start decorating
On another note, we took Bella to cardiology on Friday. They did an echo. Everything looks great. We are now just about one year post op from open heart #2 and nothing has changed (which is good). Her homograft is leaking very minimally (they all leak some). And her aortic valve is not leaking anymore than it ever has. Her cardiologist was quite happy with everything. He said she is starting to wean herself off of her meds (she gets bigger but her doses do not) She is up to 22 1/2 pounds now. We go to KC on Wednesday for her vent clinic.
I have now hit the half way mark in my pregnancy. We are no closer to picking out a name. I am still not totally convinced this is a little girl. I just felt so sure it was a boy. So I guess we won't know for another 20 weeks or so. I have not gotten any results back on the sono from the radiologist yet. I am assuming all is okay. I don't think the tech saw anything out of the ordinary. She did Bella's first echo, so I know how she acts when she sees something that is not quite right.
The kids go back to school tomorrow and let me say I am VERY happy about this. It has been over two weeks since I have had any "me" time. I am looking forward to getting my three hours a day back!!
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