Kaylee's medicine schedule changes everytime we go to a doctor and we go to some type of doctor every month if not more.
Kaylee currently takes 6 medicines in the morning and 4 medicines at night. All of them are given to her through her g-button, which is kind of nice because I am sure she would be fighting me if she had to take them orally. Her medicines rang from prevacid to calcium for her DiGeorge Syndrome to meds for her heart rate for the pacemaker. It can get really hard to keep up with all of them sometimes, especially when the amount is changing all the time.
Kaylee has many doctors on her team of specialists. She has an ENT, Pulminologist, GI, Pediatrician, Heart, and anything else they come up with that we need along the way.
Every doctor we see wants to see us more times and trying to keep up with all of their appointments along with her Therapy schedule makes for a difficult schedule to work out for work. I completely understand why some women become stay at home moms because it can get stressful trying to balance everything.
My Family
Friday, November 25, 2011
Therapy to Catch Up
Since Kaylee spent a bit of time in the hospital time she came home with a pretty big setback with milestones.
We started Therapy the month after she came home and it became very clear she was going to need ALOT of help to catch back up.
She has come a very long way with Therapy. She used to cry uncontrollably and refuse to cooperate at all. She didn't want to be touched or messed with by anyone, which made doing everyday things like taking a bath, changing clothes, and changing her diaper an all out battle.
We tried the medical brush technique in which a few times a day you take this soft bristled brush and brush her arms, legs, and back for a couple mintutes. We did this for about 2 weeks and you wouldn't believe the improvement we saw in her sensitivity to touch. She is still a little weird about anyone touching her hands, but everywhere else she goes with the flow.
She couldn't hold her head up without any support and couldn't really do anything when we came home from the hospital. We are happy to report now that she is making progress in the fact that she can hold her head up by herself, she can hold her pacifier and other toys, she likes to roll to her side, and can roll over from her tummy to her back.
She is currently at the rate of a 3 month old baby with her gross motor skills and a 6 month old baby in fine motor skills. She will be a year old next month.
Kaylee has and continues to make great strides in reaching baby milestones, but we are still a ways away from catching up to other children her age.
We started Therapy the month after she came home and it became very clear she was going to need ALOT of help to catch back up.
She has come a very long way with Therapy. She used to cry uncontrollably and refuse to cooperate at all. She didn't want to be touched or messed with by anyone, which made doing everyday things like taking a bath, changing clothes, and changing her diaper an all out battle.
We tried the medical brush technique in which a few times a day you take this soft bristled brush and brush her arms, legs, and back for a couple mintutes. We did this for about 2 weeks and you wouldn't believe the improvement we saw in her sensitivity to touch. She is still a little weird about anyone touching her hands, but everywhere else she goes with the flow.
She couldn't hold her head up without any support and couldn't really do anything when we came home from the hospital. We are happy to report now that she is making progress in the fact that she can hold her head up by herself, she can hold her pacifier and other toys, she likes to roll to her side, and can roll over from her tummy to her back.
She is currently at the rate of a 3 month old baby with her gross motor skills and a 6 month old baby in fine motor skills. She will be a year old next month.
Kaylee has and continues to make great strides in reaching baby milestones, but we are still a ways away from catching up to other children her age.
Thank you!!!
I just wanted to take the time to say THANK YOU to all my family and friends that stuck by our side during the roughest patch of our lives with me and then Kaylee in the hospital.
Without your support we would have not be able to handle all of the stress and emotion that came with having her not at home with us where she belonged.
To My Husband -- I know we did not get to enjoy the joy of bringing our newborn baby girl home, but we have her now and thats all that matters. I am sorry it took so long for you to be able to hold her for the first time and to be able to develop that father-daughter bond you deserved. I appreciate all the support you showed me and our baby girl when we needed it most. I love you! Thank you!
To My Parents -- When I began to fall yall were always there to push me back up and I cannot thank yall enough. I love yall so much and without your constant support I would not be the woman or mother I am today. Thank you!
To My Friends -- All of you were amazing from the calls to checkup on me and Kaylee to the presents and visits at the hospital. All of your support was greatly appreciated and much needed. Thank you!
Without your support we would have not be able to handle all of the stress and emotion that came with having her not at home with us where she belonged.
To My Husband -- I know we did not get to enjoy the joy of bringing our newborn baby girl home, but we have her now and thats all that matters. I am sorry it took so long for you to be able to hold her for the first time and to be able to develop that father-daughter bond you deserved. I appreciate all the support you showed me and our baby girl when we needed it most. I love you! Thank you!
To My Parents -- When I began to fall yall were always there to push me back up and I cannot thank yall enough. I love yall so much and without your constant support I would not be the woman or mother I am today. Thank you!
To My Friends -- All of you were amazing from the calls to checkup on me and Kaylee to the presents and visits at the hospital. All of your support was greatly appreciated and much needed. Thank you!
5 Month Hospital Stay
Where do I begin in talking about having your child spend the first 5 months of their life in the hospital?
We were originally told that Kaylee would only be in the hospital for a few weeks back when we didn't know that her heart defect was worse than we thought and before she came way earlier than she was supposed too. So imagine our frustration when time kepting going by.
Now when I look back on it I think about how fast time really did fly by. We spent everyday there with her (with the exception of one ice day). Time flew by because we were always waiting for a date, whether it be a surgery or growth mark.
We hung onto every word the doctor said as if it was our last. We had our good days where the doctors and nurses would say we were making great progress, but then the days would always follow with days of bigger setbacks than strides. You have no idea what your phone ringing with the hospital number at night can do to your heart. We had it happen on different occassions from her being put back on the ventillator because she is not breathing well, or she had an episode, or they need to put a new central line IV somewhere. It felt like a never ending mental battle.
You know its tough on your child with all the tubes, wires, IVs, and beeping machines. The worst feeling in the world is feeling helpless for your child. All you want to do is pick them up and say everything is ok, but the doctor says its too dangerous to pick them up at that point. You know there is no way that that beautiful little baby girl has any idea as to why this is happening to her and why I was letting it happen.
I went into many depression moments, with some lasting longer than others, but somehow I survived. I had many of days where I felt it was all going to get the best of me and I would just crumble away. I cannot even describe to you the emotional rollercoster that parents of children longterm in the hospital go through. Its a battle never meant to be won.
I can sit and complain and dwell on the 5 months we spent in the CHSU, but then I think of all the children who have been and will be in there much longer than us. I send uplifting thoughts for them everyday.
We were originally told that Kaylee would only be in the hospital for a few weeks back when we didn't know that her heart defect was worse than we thought and before she came way earlier than she was supposed too. So imagine our frustration when time kepting going by.
Now when I look back on it I think about how fast time really did fly by. We spent everyday there with her (with the exception of one ice day). Time flew by because we were always waiting for a date, whether it be a surgery or growth mark.
We hung onto every word the doctor said as if it was our last. We had our good days where the doctors and nurses would say we were making great progress, but then the days would always follow with days of bigger setbacks than strides. You have no idea what your phone ringing with the hospital number at night can do to your heart. We had it happen on different occassions from her being put back on the ventillator because she is not breathing well, or she had an episode, or they need to put a new central line IV somewhere. It felt like a never ending mental battle.
You know its tough on your child with all the tubes, wires, IVs, and beeping machines. The worst feeling in the world is feeling helpless for your child. All you want to do is pick them up and say everything is ok, but the doctor says its too dangerous to pick them up at that point. You know there is no way that that beautiful little baby girl has any idea as to why this is happening to her and why I was letting it happen.
I went into many depression moments, with some lasting longer than others, but somehow I survived. I had many of days where I felt it was all going to get the best of me and I would just crumble away. I cannot even describe to you the emotional rollercoster that parents of children longterm in the hospital go through. Its a battle never meant to be won.
I can sit and complain and dwell on the 5 months we spent in the CHSU, but then I think of all the children who have been and will be in there much longer than us. I send uplifting thoughts for them everyday.
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