Over the past 2 1/2 months Katie has been spectacular. She has done normal 5 year old things to get in trouble but overall she really has been great. She loves being Mommy's helper. The best part about it she tells me when she does not want to be my helper anymore and says she is going to play in her room.
I can't possibly know what it has been like to be a five year old going through what we are going through and how much she has comprehends through it all. She is starting to voice her opinion about what she wants. Some days it just breaks may heart. She asks me when is it her turn to just be with Mommy. Some nights she just wants to fall asleep holding my hand. I have really pushed the fact that she has to go to her bed awake and fall asleep on her own. It kills me when she cries about it but usually within 15 minutes she is asleep. Jack has been doing great with this too. He got transformer sheets for Christmas. As long as those are on the bed he will nap and go to bed anytime I tell him. Little did I know.
We have been talking to Katie about kindergarten and she is very excited. ........I just paused for a minute and was talking to Katie. We asked her who was at Ms. Becky's Monday (school closed MLK Holiday) she said Patrick with the big melon was there. (Don't hurt yorself laughing Becky!!!). I almost did. Anyway.....I think her teachers will love her. Five year old honesty kills me some days. I think it is one of the things that keeps me honest. Who wants to be busted by a five year old for fibbing????
I am just trying to savor everyday because sooner than I think it will all be a memory. Probably the one thing that gives me the best charge to get through the day or sleep through the night is watching Katie run to me because she just has to give me a hug. I will desparately miss that someday. I hope everyone has a memory to cherish like that. TTFN
Wednesday, January 21, 2009
Tuesday, January 20, 2009
A little something about Jack
Jack has really been a challenge lately. We have been getting help for him and I believe it is working but man it is exhausting. We had him evaluated by a group in our county. They believe Jack is very bright for his age but maybe not gifted. Which is okay by me. We have the paperwork in motion for Jack to be chosen for the Peer 4 program.
In Jack's class the county worker has given ideas to the teachers on how to help Jack and it is working. He loves the new challenges. He also isn't having as many accidents at nap time either. So those things are starting to come together. However Jack managed to collect some germs at school that gave him a horrible cough. I took him to the urgent care because the doctors office was about to close. The Doctor who diagnosed Maddie was on duty. I was very relieved because I knew he would take good care of us. He also knew the battle with Maddie staying well at home and would consider that when treating Jack.
What I was not prepared for was that when they took us back into the room to wait to see the doctor. I was sitting there waiting for the nurse to come in I was completely overwhelmed and could not stop crying. After collecting myself and getting help for Jack I was able to thank the doctor in person and give him a hug. He told me he was just doing his job. I told him I was glad he went beyond the lung check and noticed her heart because he saved her life. Later, that evening when I was in the car by myself picking up Jack's prescription I just started crying again and could not stop. It never dawned on me before but I never really sat down and cried. There was never time. We had to be there for Maddie and learn as much as possible as quickly as possible.
Back to Jack, Jack was then hurt in school pretty badly. His finger was smashed in the bathroom door. His fingernail instantly turned purple so I know he will lose his fingernail. The backside of the finger acquired a blood blister that drained some and tore the skin in an odd way. The doctor instead of stitches used the dermabond. It is going to take a long time before his finger heals. A friend of mine who is a nurse was surprised he did not lose the tip of his finger when she saw it.
Over all Jack is doing better. He is having less accidents at nap time, the school is working with him differently and he is doing much better. I just need to keep him from collecting so many germs and help him keep all of his fingers. TTFN
In Jack's class the county worker has given ideas to the teachers on how to help Jack and it is working. He loves the new challenges. He also isn't having as many accidents at nap time either. So those things are starting to come together. However Jack managed to collect some germs at school that gave him a horrible cough. I took him to the urgent care because the doctors office was about to close. The Doctor who diagnosed Maddie was on duty. I was very relieved because I knew he would take good care of us. He also knew the battle with Maddie staying well at home and would consider that when treating Jack.
What I was not prepared for was that when they took us back into the room to wait to see the doctor. I was sitting there waiting for the nurse to come in I was completely overwhelmed and could not stop crying. After collecting myself and getting help for Jack I was able to thank the doctor in person and give him a hug. He told me he was just doing his job. I told him I was glad he went beyond the lung check and noticed her heart because he saved her life. Later, that evening when I was in the car by myself picking up Jack's prescription I just started crying again and could not stop. It never dawned on me before but I never really sat down and cried. There was never time. We had to be there for Maddie and learn as much as possible as quickly as possible.
Back to Jack, Jack was then hurt in school pretty badly. His finger was smashed in the bathroom door. His fingernail instantly turned purple so I know he will lose his fingernail. The backside of the finger acquired a blood blister that drained some and tore the skin in an odd way. The doctor instead of stitches used the dermabond. It is going to take a long time before his finger heals. A friend of mine who is a nurse was surprised he did not lose the tip of his finger when she saw it.
Over all Jack is doing better. He is having less accidents at nap time, the school is working with him differently and he is doing much better. I just need to keep him from collecting so many germs and help him keep all of his fingers. TTFN
Monday, January 19, 2009
way behind
I realize that I have not posted in a while and have alot of catching up to do. Most of you want to know about Maddie first so I will start with the obvious. Certain parts of her recovery are doing great. She is very alert and is really trying to do the normal things for babies her age. The best part about her days now is the babbling. I love to hear and see her chatter. The best way to describe it is that she really is a chatterbox. She no longer has to take her blood pressure medicine. We will know in 30 days if she can stay off of it permanently.
The things that she is trying to do but just can't quite get she is getting help with some physical therapy. She had her first therapy session this past Thursday. Although it wore her out, an hour is a long time, she did very well. They come out to the house and work with her in a familiar environment. They are helping her learn to learn to roll over and just working with some of her weaker muscles from being in the hospital for 22 days.
They most stressful thing about her recovery is the vomiting and severe weight loss. She has managed to collect some cold germs. Which for you and I is usually not a big deal. For Maddie trying to clear her throat she gags instead and accidentally throws up her entire bottles. This has been going on off and on for the past 45 days. She has been doing really well for the past 7 days, if she does not gain a certain amount of weight by her Thursday weight check she will go back to the hospital for testing. It is a struggle to get the calories in her, mostly to stay in her.
We will see what the the weight check and the doctor says on Thursday. TTFN
The things that she is trying to do but just can't quite get she is getting help with some physical therapy. She had her first therapy session this past Thursday. Although it wore her out, an hour is a long time, she did very well. They come out to the house and work with her in a familiar environment. They are helping her learn to learn to roll over and just working with some of her weaker muscles from being in the hospital for 22 days.
They most stressful thing about her recovery is the vomiting and severe weight loss. She has managed to collect some cold germs. Which for you and I is usually not a big deal. For Maddie trying to clear her throat she gags instead and accidentally throws up her entire bottles. This has been going on off and on for the past 45 days. She has been doing really well for the past 7 days, if she does not gain a certain amount of weight by her Thursday weight check she will go back to the hospital for testing. It is a struggle to get the calories in her, mostly to stay in her.
We will see what the the weight check and the doctor says on Thursday. TTFN
Sunday, January 4, 2009
Update......better late than never.
We spent Christmas Eve with Grandma and Grandpa Bacho and had a really good time. We had dinner and had to clean up before we could open presents. I thought Katie and Jack were going to explode at the waiting. They had a great time opening presents. I hope it is a tradition they will come to enjoy.
Madelynn had not been doing really well that week and got sick again Christmas Eve. I was really worried about her. So Christmas Day I took her back to the Children's Hospital, to the Emergency Room. After examing her, although she had not really gained any weight, she was only mildly dehydrated. Since she did not have a fever or any other symptoms, we were sent home and told to follow up with her doctor.
The doctors office was closed the day after Christmas and then the weekend came. By the end of the weekend she seemed to be doing much better. She had not thrown up since Christmas Day so I thought we were finally on the back end of it. Tuesday she got sick again. After talking to the doctor we took her in for a weight check. It was still exactly the same. She had not gained any weight in about three weeks. She was finally eating again though. My hope is that when we see the doctor this week she will finally be over twelve pounds. Maddie is just over 25 inches long but at last weight check New Year's Eve she was only 11 lbs 9oz.
We have lots of upcoming appointments. My hope is that by the end of the week we will have good news to report on her weight. I hope that she will not have to have anymore breathing treatments. By the end of the week I just want to be worried when her next feeding is not how much should I feed her or will she keep it down.
Taking her to the Hospital Christmas Day was like the day her lung collapsed, or they kept her in CVICU for two extra days, or driving her back to the hospital at the beginning of December. I feel like I am failing her and completely defeated. I have not felt very social or keeping up with things. Phil has been working so much we actually thought he would have to work New Years Day so we made no plans. We just let the kids stay up as long as they wanted. Mostly so they would sleep in a little New Years Day.
However it is a New Year and it is time to start things off the right way. We have hopes for 2009!!! We hope that Katie will be very excited about starting kindergarten in the fall. We hope that Jack will be in the select number of students in our district that he will go to the elementary school with Katie in a peer 4 program. If not we will have to help him adjust to being at the school without Katie. I have to believe that what is best for him will happen though. As for Madelynn my hope for her in 2009 is that she returns to a thriving infant, that by the time 2009 is closing the events of the last 60 days will just be a memory.
It is hard to believe the events of the last 60 days and Phil and I are still her. I would have never thought that I would still be standing. We really need for things to settle down just a little bit. Some type of routine for me would be good. Right now I am just all over the place. So my hope for Phil is that God provides him with enough work so we can get by but don't kill him. I hope for myself that I can enjoy each day with my family and not what we have to do two weeks from now.
We hope for everyone that the one thing you feel you were missing in 2008 that you find it and happiness in 2009!!! TTFN
Madelynn had not been doing really well that week and got sick again Christmas Eve. I was really worried about her. So Christmas Day I took her back to the Children's Hospital, to the Emergency Room. After examing her, although she had not really gained any weight, she was only mildly dehydrated. Since she did not have a fever or any other symptoms, we were sent home and told to follow up with her doctor.
The doctors office was closed the day after Christmas and then the weekend came. By the end of the weekend she seemed to be doing much better. She had not thrown up since Christmas Day so I thought we were finally on the back end of it. Tuesday she got sick again. After talking to the doctor we took her in for a weight check. It was still exactly the same. She had not gained any weight in about three weeks. She was finally eating again though. My hope is that when we see the doctor this week she will finally be over twelve pounds. Maddie is just over 25 inches long but at last weight check New Year's Eve she was only 11 lbs 9oz.
We have lots of upcoming appointments. My hope is that by the end of the week we will have good news to report on her weight. I hope that she will not have to have anymore breathing treatments. By the end of the week I just want to be worried when her next feeding is not how much should I feed her or will she keep it down.
Taking her to the Hospital Christmas Day was like the day her lung collapsed, or they kept her in CVICU for two extra days, or driving her back to the hospital at the beginning of December. I feel like I am failing her and completely defeated. I have not felt very social or keeping up with things. Phil has been working so much we actually thought he would have to work New Years Day so we made no plans. We just let the kids stay up as long as they wanted. Mostly so they would sleep in a little New Years Day.
However it is a New Year and it is time to start things off the right way. We have hopes for 2009!!! We hope that Katie will be very excited about starting kindergarten in the fall. We hope that Jack will be in the select number of students in our district that he will go to the elementary school with Katie in a peer 4 program. If not we will have to help him adjust to being at the school without Katie. I have to believe that what is best for him will happen though. As for Madelynn my hope for her in 2009 is that she returns to a thriving infant, that by the time 2009 is closing the events of the last 60 days will just be a memory.
It is hard to believe the events of the last 60 days and Phil and I are still her. I would have never thought that I would still be standing. We really need for things to settle down just a little bit. Some type of routine for me would be good. Right now I am just all over the place. So my hope for Phil is that God provides him with enough work so we can get by but don't kill him. I hope for myself that I can enjoy each day with my family and not what we have to do two weeks from now.
We hope for everyone that the one thing you feel you were missing in 2008 that you find it and happiness in 2009!!! TTFN
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