We had a good Thanksgiving around these parts. Ate our warmed up Thanksgiving Feast from Bob Evans - very yummy! Then, took all 3 kids to see Madagascar 2 at the movies. Everyone had a great time. M sits and watches movies like a pro. She is less antsy than S:)
Friday E had to work, so Granny, the kiddos and I braved Target. We did wait until the real insanity hours were over though. Picked up some Christmas presents and some more drinkable yogurt for M.
Friday night, E and I went on our first date night in over a month. Granny kept the kids and we went to see Quantum of Solace, the new Bond movie, and then to Outback for dinner. The movie was very good - one of the best Bond films in a long time. Daniel Craig gets better with each movie he does. Outback was good too!
Saturday, November 29, 2008
Thursday, November 27, 2008
HAPPY THANKSGIVING
We are definately giving thanks for our many blessings this holiday. Happy Thanksgiving and may God bless you every day!
Wednesday Update
Today we seem to have turned another corner. M's mouth looks much better and her ear seems to be clearing out. It looks like we will have the aforementioned larger sized hole and a smaller hole that has opened up in the middle. Not too bad all in all. Hopefully, the worst is over for now. M played a lot more today and even went to the grocery store with Granny. Of course Granny guarded her like a hawk to make sure no one came too close:)
We picked up our Thanksgiving meal from Bob Evans. With it being just us for Thanksgiving, we decided to order their Farmhouse Feast. It ends up costing about the same. Looking forward to a relaxing day with the family.
We picked up our Thanksgiving meal from Bob Evans. With it being just us for Thanksgiving, we decided to order their Farmhouse Feast. It ends up costing about the same. Looking forward to a relaxing day with the family.
Tuesday Update
Well, today was S's Thanksgiving feast at school, so thankfully M was acting more like herself and I was able to leave her with Granny long enough for me to go to S's class. The feast went well and S ate 3 turkey sandwiches and then came home an hour later and wanted lunch. He went to the doctor for his checkup last Friday and the doctor said he should end up 6 ft. tall. I think he's trying to get there before he turns 6:)
M's throat still looked kind of yucky, but she just started the new (third) antibiotic. Hopefully this will clear it up for good.
M's throat still looked kind of yucky, but she just started the new (third) antibiotic. Hopefully this will clear it up for good.
Tuesday, November 25, 2008
Monday Update
Well, today was road trip day. We drove to STL to see the surgeon again. It was 8 hours of driving and 1.5 hours of doctor appointment:) The good news is the infection doesn't seem to be worse, but it isn't gone. So, he spoke with the infectious disease doctor there, and they switched her to antibiotic number 3. This should clear it up completely. They took cultures of her palate and we will probably meet with the infectious disease doc in December to try to figure out where these infections are coming from and where to go from here for planning surgery round 4 (6 if you count the neurosurgery and the lip repair:)). M's surgeon will be in India for most of December doing palate surgeries on kids their. HOW COOL IS THAT!:) I think it is awesome he is still going on these types of trips with all the years of experience he has. He has another surgeon there, who saw M the day after her surgery, who will be available if we need him. He also asked me to keep him updated on M via email. He actually apologized to me for not being able to fix M's palate this time and I felt bad. I certainly don't blame him. He made every effort to make this a success and he is leaving no stone unturned to determine what is causing all these breakdowns of M's palate.
Sunday, November 23, 2008
Weekend Update
Hey, isn't that a feature on SNL?
Well, things were fairly uneventful around here this weekend. M is not as bad as earlier in the week, but pretty GRUMPY:( She has been acting ill (as in bad 'tude). She has moved to eating a couple of bites of yogurt, but still mostly only eats broth from french onion soup.
Tomorrow is the big day. We go back to STL to see the surgeon and see how this infection is coming along. Pray for us and wish us luck!
Well, things were fairly uneventful around here this weekend. M is not as bad as earlier in the week, but pretty GRUMPY:( She has been acting ill (as in bad 'tude). She has moved to eating a couple of bites of yogurt, but still mostly only eats broth from french onion soup.
Tomorrow is the big day. We go back to STL to see the surgeon and see how this infection is coming along. Pray for us and wish us luck!
Thursday, November 20, 2008
Thursday Update
So, today's update is brought to you by the letters X and B and the number 11:)
Today was better than Tuesday, but not as good as Wednesday. M continues to do well with drinking fluids and she eats soup pretty good. Her throat doesn't seem to bother her as much. It still looks about the same as yesterday. She was more whiny and clingy today. Hard to tell if that's cause she misses her Daddy, who is out of town until tomorrow, or cause she's still not 100%.
Our awesome church family has organized dinners to be dropped off for us and tonight was the first one. It was chicken, rice and cabbage with brownies for dessert and it was delish. It really has turned out to be a Godsend, because M is so clingy that it's hard to get dinner made. I felt kind of guilty about accepting it at first, but someone once told me that when someone offers to help you in a way that let's them exercise their gifts, you should let them. So thanks, we really appreciated it.
Speaking of appreciation, thanks to everyone out there who has been praying for M and for us. I really do feel those prayers and it means a lot to me. Let me know when you need me to return the favor.
BTW, I just noticed we are up to over 500 folks having visited the blog. It seems like just yesterday it was 100. Thanks for following along!
A
Today was better than Tuesday, but not as good as Wednesday. M continues to do well with drinking fluids and she eats soup pretty good. Her throat doesn't seem to bother her as much. It still looks about the same as yesterday. She was more whiny and clingy today. Hard to tell if that's cause she misses her Daddy, who is out of town until tomorrow, or cause she's still not 100%.
Our awesome church family has organized dinners to be dropped off for us and tonight was the first one. It was chicken, rice and cabbage with brownies for dessert and it was delish. It really has turned out to be a Godsend, because M is so clingy that it's hard to get dinner made. I felt kind of guilty about accepting it at first, but someone once told me that when someone offers to help you in a way that let's them exercise their gifts, you should let them. So thanks, we really appreciated it.
Speaking of appreciation, thanks to everyone out there who has been praying for M and for us. I really do feel those prayers and it means a lot to me. Let me know when you need me to return the favor.
BTW, I just noticed we are up to over 500 folks having visited the blog. It seems like just yesterday it was 100. Thanks for following along!
A
Wednesday Update
Today was much better than yesterday. M woke up more like the M we all know and love. The back of her throat still has a yellowish appearance around the sutures, but at least it's not oozing yellow goo anymore. She ate 2 small bowls of french onion soup sans the onions. She drank quite a bit of apple juice. We did have an unfortunate throwing up incident in the morning, but only one. She is still sleeping a lot, but she is up more and playing and giggling when she is up. I think we may have turned a corner.
BTW, our surgeon actually emailed us! He gave me his card Monday and asked me to email him to update him on M. I sent him an email Tuesday and he responded today with a request for another update. He has been a really awesome doctor. I can tell he really cares about M. He said if her palate falls apart, he will lose sleep over it. I am totally in awe of the doctors who dedicate their lives to helping kids. It is their calling in life and you can tell.
Well, more later. Peace out:)
BTW, our surgeon actually emailed us! He gave me his card Monday and asked me to email him to update him on M. I sent him an email Tuesday and he responded today with a request for another update. He has been a really awesome doctor. I can tell he really cares about M. He said if her palate falls apart, he will lose sleep over it. I am totally in awe of the doctors who dedicate their lives to helping kids. It is their calling in life and you can tell.
Well, more later. Peace out:)
Tuesday, November 18, 2008
Tuesday Update
I'm just hoping I don't repeat myself, because at this point the days are running together:)
Today was the worst day for M so far. When she woke up this morning, I noticed blood in her ear, so I took her to the pediatrician here in the KC. He confirmed she has a pretty nasty ear infection in her left ear DESPITE being on A STRONG ANTIBIOTIC. He prescribed another antibiotic to cover the positive grains because the one she is on should cover all the negative grains...whatever that means. He also looked at her palate and said it is definately infected, rather yuckily (is that a word?). There is yellow goop in her hole in the suture line. The hole has gotten larger. Probably won't repair on its own. They said if she starts running a fever, we need to go to the emergency room for IV antibiotics.
So, off we went to Target for the 2nd time in 2 days. I gave her the antibiotic, which luckily is once a day, and then got some broth soup for her lunch. She ate about 1/3 cup of soup and liked it as long as I shot it into her mouth with a medicine dropper. After that, she got worse. She cried pretty much from 3-9 except for a brief respite for a one hour nap. She is hurting so bad and it is so hard to watch. The new antibiotic should kick in tomorrow, so I'm keeping my fingers crossed.
There is good news. It looks like no new areas have opened up at this point, so if we can get over this infection we might just be looking at a largish fistula that needs to be closed up and not a full-fledged repair job again.
I have to end this post with something that weighs heavy on my heart right now. I am so, so lucky and I know that I am. This is not life threatening. This isn't her last shot at a repair. She shared a room with a little girl who was 5 years old and had been in the hospital for 2 months. She had a heart transplant in December. Yet, she and her parents weren't bitter or depressed. They were hopeful and they tried to be encouraging to us. That is so humbling. Sometimes it is hard to put everything in perspective when your baby is hurting so badly, but I feel it is important that I try.
These past few days I have been ministered to by two songs in particular - the new version of Yours by Steven Curtis Chapman with the verse he wrote after his youngest daughter died at the age of 5, and Held by Natalie Grant. Both of these songs deal with the loss of a child and learning to praise God and how loved they feel in the midst of all that pain. Next to that, this is nothing. M is God's child. God made her this way in his image and he was there with her even when I could not be there. I hear him speak to me so clearly to let go of trying to make M better. I can't do it, but he can and I need to let him. It is so hard to let him be God sometimes. I feel like maybe she is lost in the sea of all of those who need him, but he reminds me she is not and he is holding her and ministering to her as only he can. So, today I kept singing "M is yours Lord, Yours Lord, all of her is yours. From the top of her head to her little tiny toes." I know I'm no Steven Curtis Chapman, but it reminds me of the point:)
Please continue to pray for M. Pray she has peace and comfort and healing. Pray for me that I remember whose child M really is.
Today was the worst day for M so far. When she woke up this morning, I noticed blood in her ear, so I took her to the pediatrician here in the KC. He confirmed she has a pretty nasty ear infection in her left ear DESPITE being on A STRONG ANTIBIOTIC. He prescribed another antibiotic to cover the positive grains because the one she is on should cover all the negative grains...whatever that means. He also looked at her palate and said it is definately infected, rather yuckily (is that a word?). There is yellow goop in her hole in the suture line. The hole has gotten larger. Probably won't repair on its own. They said if she starts running a fever, we need to go to the emergency room for IV antibiotics.
So, off we went to Target for the 2nd time in 2 days. I gave her the antibiotic, which luckily is once a day, and then got some broth soup for her lunch. She ate about 1/3 cup of soup and liked it as long as I shot it into her mouth with a medicine dropper. After that, she got worse. She cried pretty much from 3-9 except for a brief respite for a one hour nap. She is hurting so bad and it is so hard to watch. The new antibiotic should kick in tomorrow, so I'm keeping my fingers crossed.
There is good news. It looks like no new areas have opened up at this point, so if we can get over this infection we might just be looking at a largish fistula that needs to be closed up and not a full-fledged repair job again.
I have to end this post with something that weighs heavy on my heart right now. I am so, so lucky and I know that I am. This is not life threatening. This isn't her last shot at a repair. She shared a room with a little girl who was 5 years old and had been in the hospital for 2 months. She had a heart transplant in December. Yet, she and her parents weren't bitter or depressed. They were hopeful and they tried to be encouraging to us. That is so humbling. Sometimes it is hard to put everything in perspective when your baby is hurting so badly, but I feel it is important that I try.
These past few days I have been ministered to by two songs in particular - the new version of Yours by Steven Curtis Chapman with the verse he wrote after his youngest daughter died at the age of 5, and Held by Natalie Grant. Both of these songs deal with the loss of a child and learning to praise God and how loved they feel in the midst of all that pain. Next to that, this is nothing. M is God's child. God made her this way in his image and he was there with her even when I could not be there. I hear him speak to me so clearly to let go of trying to make M better. I can't do it, but he can and I need to let him. It is so hard to let him be God sometimes. I feel like maybe she is lost in the sea of all of those who need him, but he reminds me she is not and he is holding her and ministering to her as only he can. So, today I kept singing "M is yours Lord, Yours Lord, all of her is yours. From the top of her head to her little tiny toes." I know I'm no Steven Curtis Chapman, but it reminds me of the point:)
Please continue to pray for M. Pray she has peace and comfort and healing. Pray for me that I remember whose child M really is.
From the mouth of babes
This morning my mom was taking S to school and he asked me why I was tired. I told him I had trouble sleeping last night because I was worried about M. He took me by the hand, looked in my eyes, and said, "Mama, you don't have to worry about M. She will be okay during the night." Then he patted my hand.
Sometimes he is so sweet. I love my little man.
Sometimes he is so sweet. I love my little man.
Monday, November 17, 2008
Monday Update
Well, after nearly convincing myself that I was totally overreacting, this morning M wanted to eat a banana really bad, but it hurt her mouth so bad she cried. I looked at her mouth and saw more yellow/brown and a hole. I called the surgeon's office and they fit me in right away. He looked and said the repair is coming apart. All is not lost yet, the hole is about 1 inch in diameter and it may end up healing closed anyway. But, it is not what he wants to see. He gave us an antibiotic rinse for M to swish with and spit out 3 times a day. Surprisingly, she is really good with the spitting instead of swallowing.
I am praying that God will hold her palate together. I don't want her to have to go through more surgery. She is so much better off than many of the kids we saw at the hospital. We were in a semi-private room with a girl who was 5 years old and got a heart transplant last December. She nearly went into rejection and had been in the hospital since September. If M's palate breaks down, it's not life-threatening. It's just heartbreaking to see her have to go through all this pain for naught.
Please, please, please keep praying for us. We really need it!
I am praying that God will hold her palate together. I don't want her to have to go through more surgery. She is so much better off than many of the kids we saw at the hospital. We were in a semi-private room with a girl who was 5 years old and got a heart transplant last December. She nearly went into rejection and had been in the hospital since September. If M's palate breaks down, it's not life-threatening. It's just heartbreaking to see her have to go through all this pain for naught.
Please, please, please keep praying for us. We really need it!
Sunday, November 16, 2008
Sunday update
Well, today was not as good. Last night M didn't sleep well at all. She couldn't breathe good through her nose and kept waking herself up coughing and crying. She's slept most of the day today and hasn't really wanted to eat or drink. We've gotten enough in her that she shouldn't get dehydrated, but all in all it has been quite deflating after how well everything was going.
I am a total basket case about everything. I look at her palate repair and see yellowish lines and think it's getting infected, but maybe not. I am overanalyzing everything and generally just stressed and worried. I'm not a big worrier as a rule, so this is driving me crazy.
I know that I should trust God and that he will take care of her no matter the outcome and that he can hold her palate together, but I just can't seem to let go of the worry. I need the doctor to look in her mouth every morning and say that everything looks good or that it looks like the palate is breaking down. I thought I would do better this time, but I'm not. Looks like it will be a long 3 weeks.
Pray for M that she is more like herself again tomorrow and that she has a better night tonight. Pray for me that I can stop worrying so much:)
I am a total basket case about everything. I look at her palate repair and see yellowish lines and think it's getting infected, but maybe not. I am overanalyzing everything and generally just stressed and worried. I'm not a big worrier as a rule, so this is driving me crazy.
I know that I should trust God and that he will take care of her no matter the outcome and that he can hold her palate together, but I just can't seem to let go of the worry. I need the doctor to look in her mouth every morning and say that everything looks good or that it looks like the palate is breaking down. I thought I would do better this time, but I'm not. Looks like it will be a long 3 weeks.
Pray for M that she is more like herself again tomorrow and that she has a better night tonight. Pray for me that I can stop worrying so much:)
Saturday, November 15, 2008
Update
Just a quick update. M is out of the hospital as of yesterday. This is the quickest and best she has ever done in 3 palate surgeries. The surgeon went out of his way to try everything possible to make this one take. They did not do morphine this time, per our wishes, and I think it made all the difference. M was not agitated this time at all. She did awesome.
Please continue praying that her palate will hold together this time. The surgeon said if this doesn't hold he's not sure what we'll do next.
Please continue praying that her palate will hold together this time. The surgeon said if this doesn't hold he's not sure what we'll do next.
Wednesday, November 12, 2008
Big day
Tomorrow, the 13th, is a big day around these parts. M is turning 3 and to celebrate, she's having a palate revision:) Just kidding on the celebrating part. Her palate is still open to the point that she still can't make most of her sounds. With the move came a change to a new doctor - in St. Louis. We finally were able to schedule the surgery and the only time we could do it before December was on her birthday. Hopefully, she'll forgive me:)
So, tonight we have checked in at the Haven House in St. Louis and early tomorrow morning we go to the hospital for M's surgery. K and S have school, so they stayed behind in the KC with Granny. Pray for M tomorrow that she will be peaceful. She gets really anxious and fretful around doctors and hospitals.
I will update later in the week - hopefully with pictures:)
So, tonight we have checked in at the Haven House in St. Louis and early tomorrow morning we go to the hospital for M's surgery. K and S have school, so they stayed behind in the KC with Granny. Pray for M tomorrow that she will be peaceful. She gets really anxious and fretful around doctors and hospitals.
I will update later in the week - hopefully with pictures:)
Tuesday, November 4, 2008
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