Friday, December 31, 2004
4 Months Old!
I can hardly believe it, Rachel is 4 months old today!! And to mark the special event, she's starting to roll over...from her back to her tummy! She's done it a couple of times in the past few weeks, but now she's doing it over and over again.
Wednesday, December 29, 2004
An Encouraging Post...
I was lurking a cleft lip and palate message board on iVillage this evening and came across a very encouraging post. In all my research and message board reading, I've never once heard anyone mention that their child needed a cleft lip adhesion surgery, at least I hadn't read or heard of anyone until I found this post!!
This poster is a mother to twin girls, one in which has a unilateral cleft lip and palate just as Rachel has. And in her post she mentioned that her daughters' cleft lip was so bad that she had to have a lip adhesion surgery! This is exactly what Rachel's surgery in November was. I was so encouraged to read of another child having had this done. There have been times when I wondered if our plastic surgeon knew what he was doing having to do two lip surgeries. LOL.
The other thing that was so encouraging was the time frame of this baby's surgeries. One of the most disappointing things has been Rachel's lip adhesion surgery being unsuccessful, which pushes the all the other surgeries back. We're back to square one in waiting for a surgery date and Rachel will be 4 months old on Friday. Well, this baby didn't even have her lip adhesion surgery until she was 5 months old, her formal lip repair at 8 months, and her cleft palate repaired at 11 months. I can't tell you how encouraging and refreshing this post was for me. I know in my head that everything will work out, and everything is happening in God's perfect timing, but it's just frustrating sometimes.
For me, it is a tremendous source of encouragement and inspiration to read of others who "have been there, done that". All I have in regards to knowing people who's lives have been affected by a cleft of some sort is through the message boards I read and through the web sites of cleft affected children that I visit. While we're fortunate to not know anyone in real life who has dealt with a cleft, it's a lonely journey sometimes, and there are times I just feel so connected to complete strangers simply by reading their web sites and of their struggles and of their victories.
When I say it's a 'lonely journey', in no way do I mean that I feel like I'm alone on this journey, that's not the case at all. We have a tremendous support system in our families and friends. But none of them truly know the hurt, guilt, and sorrow I have as a mother who's child was born with a birth defect. Like I said, no one we know in real life has been down this road and it's comforting when I find people who have traveled this road or are traveling this road.
This poster is a mother to twin girls, one in which has a unilateral cleft lip and palate just as Rachel has. And in her post she mentioned that her daughters' cleft lip was so bad that she had to have a lip adhesion surgery! This is exactly what Rachel's surgery in November was. I was so encouraged to read of another child having had this done. There have been times when I wondered if our plastic surgeon knew what he was doing having to do two lip surgeries. LOL.
The other thing that was so encouraging was the time frame of this baby's surgeries. One of the most disappointing things has been Rachel's lip adhesion surgery being unsuccessful, which pushes the all the other surgeries back. We're back to square one in waiting for a surgery date and Rachel will be 4 months old on Friday. Well, this baby didn't even have her lip adhesion surgery until she was 5 months old, her formal lip repair at 8 months, and her cleft palate repaired at 11 months. I can't tell you how encouraging and refreshing this post was for me. I know in my head that everything will work out, and everything is happening in God's perfect timing, but it's just frustrating sometimes.
For me, it is a tremendous source of encouragement and inspiration to read of others who "have been there, done that". All I have in regards to knowing people who's lives have been affected by a cleft of some sort is through the message boards I read and through the web sites of cleft affected children that I visit. While we're fortunate to not know anyone in real life who has dealt with a cleft, it's a lonely journey sometimes, and there are times I just feel so connected to complete strangers simply by reading their web sites and of their struggles and of their victories.
When I say it's a 'lonely journey', in no way do I mean that I feel like I'm alone on this journey, that's not the case at all. We have a tremendous support system in our families and friends. But none of them truly know the hurt, guilt, and sorrow I have as a mother who's child was born with a birth defect. Like I said, no one we know in real life has been down this road and it's comforting when I find people who have traveled this road or are traveling this road.
Rachel's 1st Christmas
The evidence that Christmas was just a few days ago is surely disappearing at the Fraser House. I've been working on finding homes and places for all the toys and gifts the girls got. And the decorations are all put away except for the tree. This is the first year in the 8 years we've been married that the Christmas tree wasn't down with a day or two of Christmas. To be honest, it's the first year that our tree hasn't been a fire hazard. Gotta love artificial trees! :)
Rachel's 1st Christmas has come and gone. It's hard to believe she'll be 4 months old this week. Where has the time gone?? Needless to say, she was VERY spoiled by all her loved ones over Christmas. Both the girls were spoiled. This time next year, Rachel will not only be celebrating her 2nd Christmas, but she'll hopefully have had a successful year of surgeries. Her lip and her palate should be totally reapired by then. She has quite a year ahead of her.
Still no word from Dr Lehocky's surgery scheduler. I'm sure they have this week off. I've left several messages and haven't heard back at all. I'll try again come Monday, when hopefully everyone is back from holiday vacations and hopefully they have authorization from our insurance to redo the surgery.
Rachel's 1st Christmas has come and gone. It's hard to believe she'll be 4 months old this week. Where has the time gone?? Needless to say, she was VERY spoiled by all her loved ones over Christmas. Both the girls were spoiled. This time next year, Rachel will not only be celebrating her 2nd Christmas, but she'll hopefully have had a successful year of surgeries. Her lip and her palate should be totally reapired by then. She has quite a year ahead of her.
Still no word from Dr Lehocky's surgery scheduler. I'm sure they have this week off. I've left several messages and haven't heard back at all. I'll try again come Monday, when hopefully everyone is back from holiday vacations and hopefully they have authorization from our insurance to redo the surgery.
Thursday, December 23, 2004
Rachel with her mouth taped...
Here's a picture of how Rachel looks once we put the tape on. Dr Lehocky, Rachel's plastic surgeon, says this will help stretch those muscles out and bring her separated upper lip towards one another which will hopefully make the next surgery successful.
Sunday, December 19, 2004
Thursday, December 16, 2004
Our Girls
Hannah, 4 1/2 years old, Rachel 3 1/2 months old
This picture was suppose to go in Christmas cards this year...but I just never got around to getting reprints made. So I hope you enjoy the picture online! :)
Monday, December 13, 2004
Almost 4 Months check up
Rachel had her "almost" 4 month check up today. She weighed 14 pounds and was over 23 inches in length. She was in the 75th percentile for her weight and 25th percentile for her length... in other words, she's short and chubby. :) She's meeting all the developmental milestones for her age and is otherwise doing great. She got 4 shots today, but tolerated them well and had no reactions.
We're still waiting for a surgery date. I haven't called and bugged the surgery scheduler anymore because Rachel has had a cold and I knew she couldn't be put under if she had a cold. So no sense in calling and bugging for a date until she is completely better.
As for the attitude with the bottles, it's getting better. It's there sometimes, but nearly not as bad as it was. Praise the Lord!
We're still waiting for a surgery date. I haven't called and bugged the surgery scheduler anymore because Rachel has had a cold and I knew she couldn't be put under if she had a cold. So no sense in calling and bugging for a date until she is completely better.
As for the attitude with the bottles, it's getting better. It's there sometimes, but nearly not as bad as it was. Praise the Lord!
Tuesday, December 07, 2004
A Trip to the Pediatrician
Rachel has been putting her hand up to her ear a lot over the past day or two, so I thought I should take her in to see Dr Berry, our Pediatrician, to get her ears checked out. Praise the Lord her ears were not infected, nor did they have any fluid in them!! Just a little wax build up that might be bothersome or itchy.
One of the side effects or common ailments when having a cleft palate is increased ear infections. And because of that, we try to feed Rachel in a somewhat upright position, when she cooperates that is. I'm so thankful her ears were clear, it's one of the things I have on my list of prayers for Rachel.
Rachel's been a little difficult when it comes to giving her the bottle lately. She'll cry and throw a fit for a while, but eventually eats and finishes it. But it's just so frustrating. I mentioned it to Dr Berry today, and he said since her ears checked out and her throat appeared fine, it's probably just her having an attitude. I hope her attitude changes soon. LOL.
One of the side effects or common ailments when having a cleft palate is increased ear infections. And because of that, we try to feed Rachel in a somewhat upright position, when she cooperates that is. I'm so thankful her ears were clear, it's one of the things I have on my list of prayers for Rachel.
Rachel's been a little difficult when it comes to giving her the bottle lately. She'll cry and throw a fit for a while, but eventually eats and finishes it. But it's just so frustrating. I mentioned it to Dr Berry today, and he said since her ears checked out and her throat appeared fine, it's probably just her having an attitude. I hope her attitude changes soon. LOL.
Tuesday, November 30, 2004
Follow Up with the Plastic Surgeon
We saw Rachel's plastic surgeon today. And just as we thought, we're back to square one, Rachel's lip adhesion will need to be redone. Dr. Lehocky needs to get with his surgery scheduler to determine whether or not he can work Rachel in sometime in December, if not, her surgery will be in January.
We asked him his opinion of using a NAM (Nasal Aveolar Mold) or another molding device that would help in bringing her palate closer together. They don't use such devices at Loma Linda, but he did recommend using a special medical tape to bring the two sides of her lip together. The purpose being to stretch those muscles and bring them closer together. So he showed us how to apply it and that's the route we'll go in preparing for the next surgery. She looks different just with the tape bringing her lip together!
Other than the appointment news, Rachel continues to eat well. We increased her bottles this week and she's not having any problem in finishing them. She's continuing to sleep well, and it's safe to say she definitely sleeps through the night! She's smiling lots and is making cute little noises and cooing. She's defiantely starting to show her little personality.
Thank you once again for those of you checking this page regularly, and for your thoughts and prayers for Rachel. We sure appreciate them!
We asked him his opinion of using a NAM (Nasal Aveolar Mold) or another molding device that would help in bringing her palate closer together. They don't use such devices at Loma Linda, but he did recommend using a special medical tape to bring the two sides of her lip together. The purpose being to stretch those muscles and bring them closer together. So he showed us how to apply it and that's the route we'll go in preparing for the next surgery. She looks different just with the tape bringing her lip together!
Other than the appointment news, Rachel continues to eat well. We increased her bottles this week and she's not having any problem in finishing them. She's continuing to sleep well, and it's safe to say she definitely sleeps through the night! She's smiling lots and is making cute little noises and cooing. She's defiantely starting to show her little personality.
Thank you once again for those of you checking this page regularly, and for your thoughts and prayers for Rachel. We sure appreciate them!
Wednesday, November 17, 2004
A Bump in the Road...
:::sigh::: We've encountered a bump in this road of Rachel's journey. This morning her entire repair split. Rachel's cleft lip is once again wide and her nose is flattening out again. It's not as wide as it was prior to surgery, however, we can see up into her nose and see the incision site.
I know this can be fixed, but it's so discouraging. I'm trying to be strong, but I have to be totally honest and share that today has been a really been a rough day for me. I've tried to keep busy most of the day, but in the still moments of the day, I can hardly stand it. I had accepted this journey that the Lord has given us, but I don't like the bumps we've encountered. I'm not quite sure why the road couldn't have been smooth, but God knows. I know in my heart, and my head, that Rachel's going to be just fine, and the Lord still has His hand on us, it's just been one of those days where I am sad we have this journey to endure.
I know this can be fixed, but it's so discouraging. I'm trying to be strong, but I have to be totally honest and share that today has been a really been a rough day for me. I've tried to keep busy most of the day, but in the still moments of the day, I can hardly stand it. I had accepted this journey that the Lord has given us, but I don't like the bumps we've encountered. I'm not quite sure why the road couldn't have been smooth, but God knows. I know in my heart, and my head, that Rachel's going to be just fine, and the Lord still has His hand on us, it's just been one of those days where I am sad we have this journey to endure.
Monday, November 15, 2004
Only a Season...
Yesterday, at church, a gentleman was asking about how Rachel was doing and how her week had been since surgery. I was sharing with him that the last couple of days she had been fussy and cranky because the antibiotics were really starting to bother her tummy. And he encouraged me by saying "this is only a season". I've been thinking about that statement, and it's so true. This fussy and crankiness is only a season. And as quickly as the seasons come and go, this season of Rachel's recovery will also be gone. And we'll be in a new season of Rachel's journey.
Friday, November 12, 2004
With her Cleft Bear
Isn't she cute?!?!? Gramma and Papa brought Rachel a gift the morning of her surgery, it was a teddy bear with a cleft lip that has stitches. Gramma found it and ordered it through http://www.cleftline.org.
Day 5 After Surgery
Taken 5 days after her inital lip repair. Still needs some work and perfecting, which will take place when she has her final lip repair in February, but the difference in her appearence from this surgery is simply amazing!
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