 | September 15, 2007 ~ Cora's surgery yesterday went well. Cora was a sick, sleepy little girl afterwards but today she's up and running again. She seems to be feeling fine and not having much pain at all. Tonight is the first time she's mentioned anything hurting. I've attached a picture rather than trying to describe the work done. It's still kind of hard to see what was done with all of the swelling but this should give some idea. For the next 3 weeks Cora is restricted to quiet play. Lots of movies, books and games for us!!
We found out this morning that we are September's feature family on www.cleftadvocate.org. Cleft Advocate is a source of support, information etc. for people affected by cleft lip and palate. |
September 6, 2007~ Cora attended her second night of Cubbies last night at church. She is having a great time with that. I think she wishes she could go to Cubbies everyday! Cora will be having surgery a week from tomorrow. She had her pre-op appointment today....everything is set to go once again. Finally, we have an eye that's working out for her. There for awhile we were having all kinds of trouble with it. It was even lost in the yard for about a week!! That was scary. I actually have pictures to post this time too...so check that out. We'll be updating again next week with the surgery outcome.
July 12, 2007~ Cora has a facial revision surgery tentatively scheduled for September 14.
May 17, 2007~ Here's a link to the Baptist Bulletin Photo Gallery. Sorry the actual article isn't online, but there are some good pictures.
Cora's surgery on Tuesday went pretty well once it got started. Her surgery was scheduled for 1:30pm. They didn't even come to get her until 4:30. The hospital has remodeled the prep/recovery areas. They now have rooms with real walls and doors rather than curtains that go all the way around the bed. They also have tvs in each of the rooms. That made that extra 3 hour wait a little easier!! Cora's surgery was done in just over an hour. The band on her ankle is now completely removed. The puffiness in Cora's foot is mostly gone now. The tear duct portion was unsuccessful. The doctor believes they ran into bone when trying to get the wire through. More extensive surgery which will probably include drilling through bone will be required later. There were no facial revisions done during this last surgery. However there is already talk of when that will be happening. We are supposed to be checking our calendars for a good time in September. Cora is recovering well. We have had to keep her off her feet the last couple days but she is really doing well with it. She has figured out that she can still get around by crawling and has been up and playing and just being herself with the exception of walking all over the place.
May 6, 2007~ Cora will be turning 3 in just a few weeks now and we are busy. Cora will be having surgery on May 15th. During this surgery doctors will finish releasing the band on her ankle, and unclogging her left tear duct. We are still not sure(and won't know until the day of surgery) if there will be any facial revisions done this time.
In other news....we have 2 meetings coming up to assess Cora's future therapy and educational needs. At age 3 children who need therapies are handled by the local school district. Cora will have an evaluation and then a week later we will sit down to discuss what they think she needs and how to get it done.
The prosthetic eye situation hasn't been going so well. Cora actually lost her painted eye and we had to go back to a solid white one. We have an appointment with the ocularist again at the end of the month.
This month's issue of the Baptist Bulletin features an article written about Cora and the journey our family has been through these past few years. Our family picture is on the cover!!! It should be posted online soon with a photo gallery. I'll post a link as soon as it's up.
February 23, 2007~ All the doctor's appointments last month went well. Neurosurgery was short. There are no problems so we just have to go back in a year. Opthamolgy was interesting. It took 3 hours for everything. There was a vision test first, then Cora's eyes were dilated and we had to wait for an hour before the actual doctor saw her. He confirmed the need to surgically clear the tear duct blockage and also gave us a prescription for glasses. No major vision problems but enough of one that he thought it necessary to prevent it from getting worse. We also saw the plastic surgeon around that time. He talked of possibly doing some facial revisions when he finishes releasing the band on her ankle. The opthamologist and plastic surgeon now have to get together to decide when they can do this surgery. We are still waiting to hear back as to when that might be. We are now considering seeing a hand surgeon for Cora's right hand. It has been changing as she has grown and we would like to find out if there is anything that can be done to give her even more use of that hand. Last night we attended an informational meeting to prepare us for Cora's transition from Early Intervention to the school district's Early Childhood program.
January 5 2007~ Hope Everyone had a good Christmas and New Years. We were very busy with all the festivities. Cora really enjoyed Christmas this year and we couldn't get her to stop asking for more presents! She learned all about Baby Jesus in Sunday School and was in her first Christmas program. She didn't really sing the songs but she sure looked cute up there. We thought things would slow down a little now that the holidays were over but that's not happening. We finally got an appointment with the opthamologist...that's in a couple weeks. Yesterday I was able to schedule her an appointment for a checkup with her neurosurgeon...that's next Thursday. Today I had a message from plastic surgery so I called back and Dr. Bauer wants to see her right away. We'll be going there on Monday! Cora got her painted eye on Dec. 20th. I have to figure out how to get the pics into the right format so I can post them.
November 30 2006~ OT is going well. Cora's favorite part is Mr. Potato Head and she is starting to look forward to seeing Sharon every Tuesday. We finally have a date for Cora to get her painted eye. We go to pick it up on December 20th. Just in time for Christmas. Speaking of Christmas, this year Cora is really noticing the lights and "Chrimats trees "(Cora's pronunciation). It's fun to see her get excited when she sees all the lights.
October 12 2006~ Cora started Occupational Therapy on Tuesday. There aren't any major concerns, just a few little things for her to work on to help her with some fine motor skills. One of the goals is to get her to have as much use of her right hand as possible. Cora recently had another speech evaluation. There are absolutely no concerns with her speech. At 27 months old she tested at 27 months for Receptive and 30 months for Expressive. That really wasn't a surprise...she always has something to say. She's even starting to say some words in Spanish. (Maybe she's watching too much Dora??) Eye conformer therapy is going well. We've only been going every 4-6 weeks recently. We've finally found a shape that works so we just keep moving up in sizes. Hopefully by the end of the year she will have one that has the iris painted on. We've put a new picture up on the home page and hopefully soon we will be adding more to the pictures page.
| September 15, 2007~ Yesterday's surgery went well. I have posted a pic of the changes in Cora's face rather than trying to describe them. Recovery started out slow. Cora was very sleepy and then nauseous. She's doing great today though. She's been up and playing all day. She doesn't seem to be in too much pain.(She's refusing pain meds.) She's restricted to quiet play for the next 3 weeks. |
July 11,2006~ We have been continuing to see the ocularist every 2-3 weeks. Cora is getting closer to having a conformer with the iris painted on. Cora recently had her 2 year old checkup and NICU followup appointment. Both went very well. At the NICU appointment she was given a development test. She did great! She scored 94 out of 100. A year ago when she was given the same test her score was in the 70's. We have new pics to add soon!!
June 1, 2006~ Cora's 2nd birthday is just a couple days away! It's hard to believe that 2 years have already passed. We have been enjoying some warm, sunny days outside with the ball and bubbles. Cora is still a little unsure about grass. She avoids touching it as much as possible. I'm posting a pic of Cora's first eye thingie as we call it. She is on her 3rd one now and it looks quite a bit different and hardly ever comes out. Hopefully this picture can give an idea of what the conformer looks like.
May 17, 2006~ We just started with week 2 of stretch conformer therapy(part of the process of getting an eye prosthesis). At this point Cora has a small piece of clear plastic inserted into her eye. She received a bigger size yesterday, and will continue to hopefully receive bigger sizes every couple weeks. Eventually an impression will be taken of her eye socket so that a more permanent prosthesis can be made especially for her. She has to be anesthetized for that so it will occur probably at the same time as the surgery to finish her leg.
May 1, 2006~ Cora is doing great! How crazy is it that she will be 2 years old in just over a month? We haven't had any appointments recently but we've got a big one coming up on May 9th. We are finally going to see the ocularist! That's the doctor who will be working with Cora to get her a prosthetic eye. Cora is learning more and more everyday. It's so much fun to watch her explore and learn. We have been to the park in our neighborhood a couple times already this spring...Cora loves to "wing wing" (swing). Almost everytime we go out the door she points towards the park and asks to swing. We've got some great new pics to post, they still need some work though before I can upload them. Hopefully I can get them up by the end of the week so keep checking for those.
March 24, 2006~ We saw the cleft team's speech therapist yesterday. She was also very pleased with Cora and agreed with the EI therapist. She asked us to come back in a year so she can monitor Cora. We can of course see her before then if any issues arise.
March 16,2006~ Well we survived a flu bug. Cora was sick about 3 days last week. She's doing fine now though. Today she was evaluated by the Early Intervention speech therapist. Guess What?!?!? She's right where she's supposed to be for a 21 month old and according to this therapist doesn't need any therapy! Next week she will see the speech therapist that works with the cleft team at Children's. We'll see what she has to say about Cora's speech. I don't think I can even begin to share all the words Cora is saying now. Some of our favorites are I love you, backpack, thank you, and Cora. She has now taken to repeating lots of things that we say and trying out new words. It's a lot of fun to hear her learning.
We had an appointment with the plastic surgeon 2 weeks ago. It went well. He's very pleased with how everything is turning out. He told us that he will be contacting an ocularist to find out what steps we need to take in getting Cora ready for a prosthetic eye. As of today there was no news on that. He said he can finish removing the band on Cora's leg whenever we are ready and it works with his schedule. We will probably wait until this fall unless she is having something else done for the eye stuff.
February 28 2006~ Cora is now sleeping in a big girl bed. She is doing really well with it, and has only fallen out once. Cora is talking and talking now. She has learned several words. I think she learned a new word every day last week. Thursday we have a plastic surgery appointment. Hopefully we will be discussing what will be coming up next.
February 1 2006~ We just returned from an awesome weekend in Las Vegas! It was a great trip, there are a couple of pictures from our trip on the pics page. Cora did well on the plane, though I think she was a little bored after awhile.
Cora's leg is healing very well. There is a new pic of her leg along with the before and after pictures. Cora was able to wear her shoes again 2 weeks post surgery. Almost as soon as those shoes were on she took off walking. She has been walking around by herself since then.
January 10 2006~ Cora has more or less recovered, she acts as if nothing ever happened. Here are before and after pictures.
January 6 2006~ Cora's surgery was today. Everything went well, it took just a little over an hour. The doctor said he released about 3/4 of the band. We have yet to see, it is all bandaged up. He also said that he checked to see how her palate is healing. It is looking great, things are doing what they are supposed to do. Cora is recovering well, she slept most of the afternoon and now this evening is eating and drinking and even mostly happy. Sunday night she will get a bath and then we have to rebandage her leg. We will rebandage every day from then until we go back to see the doctor around the 17th. We will put before and after pictures up as soon as after pictures are possible. Thanks everyone for your prayers today and everyday! :)
January 3 2006~ Happy New Year!!! Cora is 19 months old today!! Her surgery is still set for Friday. It is estimated to take about an hour. They will repair 1/2 to 2/3 of the band around her leg. We won't even be going to the hospital for this surgery, just an outpaitent clinic. The fun part will be afterwards, Cora will need to stay off her feet for about 2 days. How do you keep a determined 19-month old who is learning how to walk off of her feet? It will be interesting!! Yeah!
December 6 2005~ Cora's 18 month checkup was today. She is doing great! Growing just like she should be. No major medical news, we're just chillin' till January. She's still not walking but is getting more and more courageous. She has taken a few little steps on her own.
October 14~ Cora is scheduled for the surgery on her leg. It will be January 6. It should be just a simple outpaitent procedure. It's amazing how much Cora is learning every day now. She knows more signs than we realize. Some of her newest ones include all done/gone, go, bird, and baby. She has also learned a couple new animal sounds, cat and dog. Cora loves music and loves to dance to it. She has figured out how to turn the TV on and off. She still hasn't taken those first steps, but she has stood alone a couple of times. She just doesn't want to yet. There will be new pics some day. We had to get new batteries for the camera, so we weren't able to take any for awhile.
September 22~ We made it this week to the plastics checkup....The doctor says Cora is looking great, and it is now time to see the speech therapist. Also we are in the process of scheduling the surgery for the band on her leg...It will be in January. Cora has learned 2 more signs, more and bunny. She is starting to say words instead of just babbling now. In the past week she has started saying "Hi" to everyone she sees.
September 9~ Cora has learned more signs in the last couple of weeks. She has added butterfly and car to her signing vocabulary. She has also learned what the cow says..."mmmmmmm". We will be going back to see plastics next week for a checkup.
August 25~ Cora is doing well...Her follow-up appointment went well and we go back again in another couple of weeks. In the meantime we are trying to keep up with all the massaging, it is much harder than expected. Soon we will be scheduling Cora's next surgery...this surgery will be to release half of the band around her ankle and do any facial revisions that are needed at that time.It will probably take place sometime around the end of this year or the beginning of next. A few months after that they will do the other half of the ankle band.
Since Cora's surgery we have seen so many changes in her. She seems to have gotten a lot older. She has learned that with her new mouth she can make lots more sounds and is "talking" constantly now. She has really taken off with eating solid foods and she LOVES her Cheerios! Cora has added several more signs to her sign language vocabulary. She is now saying shoes, cat, dog, book, please, and milk. Cora hasn't started walking yet, but getting around is not a problem for her...she crawls everywhere, climbs on everything even up whole flights of stairs, and she does some walking holding on to furniture.
July 26~ Everything went well today and the stitches are out. The doctor says things look great and we have a follow-up appointment next wednesday. We are to leave the arm restraints on and continue syringe feeding through Friday.
July 25~ Stitches come out tomorrow morning!! Once again we have to be at the hospital at 6 am, for surgery at 7. This one should only take a few minutes and we'll be coming back home afterwards.
July 19~ God, in His grace, has brought Cora through another very successful surgery. We were given the news of answered prayer (after waiting 7 ½ hours) that the doctors were able to reconstruct more than they originally expected during this particular surgery. Completed work includes giving her a "sticky out-y thing" for her nose, repairing the soft AND hard palate, closing her right eye lid, repairing the cleft on her lip, and fixing the tear duct in her left eye. The doctors used skin that was stretched with the expander to correct the facial cleft.
July 18~ Cora's surgery is scheduled for 730 am tomorrow. We will have to be there at 6 am. We will post an update on how things went as soon as we get a chance.
July 14~ 5 days until surgery. Cora has had her physical and is ready to go bright and early Tuesday morning. The skin formed by the expander will be used as doctor's are fixing Cora's right eye and nose. The goal for the right eye is to make it look as if it is always closed. Skin will somehow be pulled down and twisted around to form her nose. Her lip will be repaired and the soft palate. We have been told to expect Cora to be in surgery for 4-5 hours, and depending on how she does will go home in 1 or 2 days. It will be an interesting week afterwards, but with Aunt Rachel coming to help things will be a lot easier. :) Cora will have to wear arm restraints for several days and can only be fed through a syringe. Nothing is to touch her mouth to protect the areas with stitches. We will take her back in the next week to have the stitches removed.
July 6~ 13 days until surgery. Cora is up to 60 cc's in her expander now. Also just yesterday we discovered tooth #7!
July 1~ Again we've done 2 more expansions since the last update. Cora has 54 cc's in her bubble now. We saw the doctor a week and a half ago. He says everything is looking great. He said it looked like there was plenty of skin to work with already but still wants us to expand every week just not as much. He wanted us to come back the week before surgery to discuss the details. 18 days until surgery!!
June 21~ We've done 2 more expansions since the last update and Cora's bubble is up to 38 cc's. Another expansion is scheduled for later tonight, and then tomorrow we go in to see the plastic surgeon to check on the expander's progress and talk details about the upcoming surgery. Surgery is 4 weeks from today.
 | June 3~ Cora turns 1 today! Happy Birthday Cora! |
June 1~ The bubble is growing! Expansion #2 took place last night. Cora now has 22cc's in her expander. We've finally got those new pictures up. Check them out!
May 23~ Cora is still doing well, her antibiotic isn't being very friendly but only a few more days of taking it. The drain came out friday night. That was an exciting moment, it meant no more arm restraints! Cora goes back to the doctor tomorrow for her first expansion.
May 18~ We are home from the hospital now. Cora's surgery went very well. Everything happened just as planned. She is making a QUICK recovery. Already she is wanting to get down and play like normal. The arm restraints that she has to wear are making things a little challenging. Those will come off as soon as the drain comes out this weekend sometime. We were given the tools and instructed on how to do it at home to save us a trip to the city. In the meantime though we have to change the drain tube every 4 hours during the day, as well as making sure she gets her antibiotic 4 times a day and painkiller as needed. We will go back to the doctor's office next week sometime for the first expansion. New pictures coming soon from this recent adventure.
May 16~ Surgery is bright and early tomorrow morning at 7:30 am!!
May 12~ We had an appointment with the pediatrician yesterday. He says Cora is good to go for surgery on tuesday(17th). We visited the neurosurgeon last Thursday. Cora had to have a head CT to check things out, but everything was fine.
At home...Cora has finally gotten the hang of crawling on hands and knees instead of doing the whole army crawl thing. She is also pulling up on any and all furniture that she can reach. It's quite funny to see her peeking out over the top of her bed. No more checking on her without her knowing. We have been letting Cora watch a sign language DVD for the past several weeks. She loves watching the animals and kids on it. She now has the ability to tell us when she wants to eat. She does the sign for milk (which is just squeezing the hand, like milking a cow.)whether she wants her bottle, or crackers, or any other food she might want. It's so hard to believe that her 1st birthday is just a few weeks away. Information on a birthday celebration will be posted soon!! Everyone is invited!!!
April 22~ We met with the plastic surgeon yesterday. He went over the plan of action with us. First off we have to have a tissue expander training session on May 3. Then in the days to follow Cora will have to be cleared for surgery by her pediatrician and neurosurgeon. Then, on May 17 the tissue expander will be put into place. In a 1 hour surgery they will make an incision along the browline on the right side, and the expander will be placed in the middle of her forehead. She will have to stay overnight after the surgery.
The tissue expander will be in for about 8 weeks and tenatively on July 12 Cora will have her major reconfiguring surgery. In that surgery they will repair the lip, and form the midline of the face. They will also close the eye area on the right, as well as fixing the soft palate and some of the hard palate. All of this will take about 4-5 hours. Cora will once again have to stay overnight, possibly two nights. She will have to be fed through a syringe and wear arm restraints so the stitches will not be disturbed. The stitches will be removed one week after surgery.
April 6 ~ The tooth count is up to 4!!!
March 23 ~ The tooth count is officially at 3!! Cora has 2 bottom teeth and as of sunday 1 on top
March 16 ~ It's been awhile since we've posted an update. Here's what's been happening...We have been going to the doctor every 2 weeks so that he can monitor the healing process from the cyst removal. As of Monday Cora is bandageless!!! We are going back sometime the week after Easter to discuss moving forward with other surgeries.
Cora recently had her 9-month check up. She is doing great. She weighed 17 1/2 pounds and was 26 inches long. The pediatrician was quite pleased.
At home we are going to have to start making some changes, Cora is starting to become mobile. She hasn't crawled forward yet but gets around great scooting backwards. She has also become very interested in eating solid foods. She thinks she needs to eat whenever we do, which is making meals a bit more challenging.
January 10~ Happy 2005! Life has been WILD for us this past month. We were busy getting ready for and celebrating Christmas. In the middle of December Cora started developing a bump on her head. We watched it and noticed it getting bigger so we took her to the doctor to have it checked out. He said he didn't know what it was, but that we should watch it and if it continued to get bigger he would have a CT scan done. The next day it was bigger so we called him back and he had us go to a local hospital to have the CT scan done. The results were that everything looked good, and they didn't know what the bump was either. They told us we should go see her neurosurgeon. Christmas Eve or the day before we noticed that "The Bump" was turning red. It also seemed to cause pain when it was touched so we waited until all the Christmas celebrating(late saturday night) was over and took Cora to the ER at Children's. The doctor's there basically poked a hole in the bump and squeezed out a lot of pus and nasty stuff, put a bandage over it, gave us some antibiotics to give her and sent us home telling us to come back the next day(monday) to follow-up. Monday we drove back to the city to have the doctor that saw her tell us to keep doing what we had been doing and to follow up with her pediatrician in a couple days. While we were in the area we decided to go see Dr. Patel, Cora's plastic surgeon to talk about getting started on surgeries. He saw her head and asked if he could take a look. So he looked and told us that he thought it needed more help. So Tuesday morning we drove down to the city again for Outpaitent Surgery. Cora's surgery was supposed to be at 10 am and last about 20-30 minutes. She ended up going in at about 2 pm because of delays with other surgeries, and it lasted almost an hour. In the end we found out that Cora had a dermoid cyst that was infected. The surgery left her with 3 stitches and and a little rubber drain in her head, which have since been removed and the hole is now healing.
Tuesday night Dan decided it was his turn. He was so sick he ended up in the hospital. They couldn't really figure out what was going on with him either. After 2 1/2 days and ruling out the appendix and gall bladder they finally decided it was just a really severe case of the flu. Dan was released from the hospital Friday evening.
Meanwhile Cora hasn't been herself, not eating, diarrhea, and eventually a fever. We called the plastic surgery resident that was on call and he said he thought we needed to take her to the ER. So 3 hours after getting Dan home we were on our way to the hospital again. Cora had X-rays to check out her shunt, which was fine. She had bloodwork done and they discovered that she was dehydrated so they started an IV and gave her fluids. She ended up being admitted and they continued the fluids until monday night. Tuesday afternoon we finally got to go home. While it was good to see all of our old friends on 7 West, it felt so good to finally get home. The past week we've been playing nurse at home making sure Cora gets her antibiotics 3 times a day and has her bandage changed 3 times a day also.(Today was about 7 times because she kept pulling it off.) We have some pictures of our adventures that will be coming soon.
December 3~ Happy Half-Birthday to Cora!!!! Cora is 6 months old today! Cora's 6-month checkup with the pediatrician went well. He said she is doing great. She weighed in at 14lbs and was 24 1/2 inches tall.
November 12~ Cora has taken another step towards becoming a big girl! We started giving her rice cereal this week. It has been a rather messy adventure, but we are learning as we go. Cora has her 6 month check-up next week (a couple weeks early), so we will be seeing just how much she has grown.
October 24~ Not a whole lot going on with doctors right now so nothing new to share there. In everyday life things are changing though. Cora is really starting to love her toys, especially those little link things, not only do they make noise but she can chew on them too. Cora has also been working on a new trick...Sitting up! She has even sat up by herself for as much as a minute but usually she still needs a little help. Cora has also found out that she can squeal,and she is quite the noisemaker.
October 5 ~ We saw the plastic surgeons on Thursday. They are giving us the option as to when things will start. Surgeries could start as early as next month or we can wait until after the holidays. The details of where they will start and what they will do was alot of information to take in, so we are waiting on a letter from the doctor explaining it more before we decide. We do know that they very first thing that will happen will be putting in skin expanders. (A silicone balloon expander is inserted under the skin near the area to be repaired and then gradually filled with salt water over time, causing the skin to stretch and grow.) Cora will probably have those in place for 6-8 weeks. Then the repairs will begin. The nose/right eye area will be worked on first followed by the lip. We will be sharing more details as we know them, hopefully in the next few days.
September 24~ Cora went to the pediatrician for her 4 month checkup and shots yesterday (thursday). The doctor said she was doing EXCELLENT! She weighed in at 12 pounds 4 ounces and she was 23 inches long. Next thursday we have an appointment with the plastic surgeons so we will probably know when surgeries will begin by this time next week.
September 2 ~ WOW! Cora will be 3 months old tomorrow. There hasn't been much going on with doctor's since the last update. Things will be picking up again at the end of this month though. We are scheduled to see the plastic surgeons on the 30th. Cora has really been starting to get active lately. She loves to play with her musical gym. It starts to get annoying when you've heard "I've Been Workin' On the Railroad" for the 10th time in 2 hours but it makes Cora smile. She's usually full of smiles(and drool!). We'll be putting some new pics of those beautiful smiles up soon so stay tuned.
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August 5 ~ Doctor's appointments have been going well. Cora's neurosurgeon was pleased with her progress and told us that her latest head CT from July 16th looked good. Her ventricles have gotten smaller and her brain is bouncing back from being compressed for so long.They'll see her again in 3-4 months. The Ophthamologist said that all still looks good with her left eye and that they would work with plastic surgery for cosmetic repair of the right eye. Cora's speech therapist has seen her twice and thinks that she is feeding fine, and it shows. Cora weighs 11 pounds now. Today we saw the plastic surgeon. We didn't find out a whole lot. He wants us to meet with him and his partner at the same time so they can work together on a game plan. He also gave us the phone number of a doctor to look at Cora's hand and feet. They took a lot of pictures though, so that they can begin planning.
July 6 Our last week has been much like any other week would be for new parents--changing diapers, feeding Cora, never sleeping...Praise God for normal chaos! Cora has adjusted well to being at home and is starting to sleep with much more regularity than a week ago. Kari is completely better after receiving antibiotics and allowing "Grammy Tammy" (our pastor's wife) to watch Cora while we sleep. Cora has been steadily gaining weight and is now at 8lbs. 7oz. Her head circumference has been staying at a healthy 39.5cm. Thanks so much for the cards, letters and emails. God has been using so many of you to encourage us. Surely you will be rewarded. ( Matthew 10:42)
June 27 As you've read, Cora is HOME!!! We are so grateful to God for that. Our daughter is doing quite well, thanks to a great medical team, your prayers and the work of God. She is now taking almost the entirety of her meals through by bottle, NOT through a tube, thanks to a new nipple that we tried a few days ago. Her stitches are out now and Neurosurgery says that they are pleased with her progress and that the shunt is doing well and is infection/malfunction free. After reading the CT's and MRI's, they also told us her ventricles are also looking healthier, though there's still no word on how her brain is doing overall. Her skull should fuse itself together now with no further intervention. By the way, 7W, thank you so much for taking such good care of our little Cora--you guys are the best. Many of you have asked how to pray more specifically; here's how:
For Cora to adjust to her new surroundings--home just seems a little too quiet for her
For our health--Kari has been ill:-(, but thankfully Cora and Dan are still healthy
For our relationship with God--that it would continue to grow stronger
For others--that they would be drawn to God
Thank God for the medical progress that has been made
Thank God for the lives that have been changed through the witness of these miracles
Thank God for His amazing peace and joy and grace and mercy given to us
Thank God for the support He has provided: medically, emotionally, financially, spiritually
Praise God because He alone is God.
June 26 - Great News!!! Cora came home yesterday, three weeks and one day after being born. Dan and Kari were both excited to get their little one home. Dan and Kari will update soon but they have been a little busy lately getting ready for Cora to come home and have had little access to a computer. As their Pastor I want to thank you for your support and care of them. They have asked for those of you who are local to please give Cora some time to adjust to her new surroundings before planning to visit. Continue to pray. There is much ahead and God has already done so much.
June 19 Cora has been making steady progress with bottlefeeding, regularly taking an ounce at a time every time she has the chance. We look forward to her advancing to larger quantities in the future. Her head circumference is down to 39.5cm. We're still waiting to hear the results of the MRI done last Tuesday as well as another CT scan done yesterday. An occupational therapist is now working with Cora to help her use her right hand and look to her right with her left eye. Because she doesn't need as frequent care as she did the first week and a half, we won't be updating quite as often (only 1-2 times a week or as significant things happen). We are so grateful for your continued prayers and encouragement.
June 14 So you all may know Cora Leigh's aproximate size, her head is 40.5cm (16in) in circumference, she weighs 7lbs, 7.5 oz and she is 49.5cm (19.5in) long. We cannot do anything but thank our Lord for our little Cora. For those just tuning in...Before she was born, doctors spoke of us only having days at the longest and just giving her "comfort care"--making her comfortable, but not actually offering a cure; with the knowledge they had, they didn't think there was one. At one point, one doctor even suggested that we kill our precious child, because she would not likely live long anyway. So, we put everything in God's hands, not understanding why things were happening this way, but trusting Him to be good because He is good and He is love ( 1 John 4:8). We decided that if Job could praise God after he lost everything (his wealth, his 10 children and his health--Job 1, 2), then we certainly could in our much smaller trial. We began to thank God for using Cora to help us as much as He already had, to bring us closer together, to bring our families closer to us, to bring us closer to our church family and ultimately and most importantly, to bring us closer to God. Then she was born and we were overjoyed that we could hold her and see her beautiful face and hear her make random sounds and smell her hair and thanked Him and praised Him even more. Since then, God has continued to do amazing things even if we were only considering the physical realm--getting her trasferred to Children's Memorial Hospital (the best pediatric hospital we know of), providing a place for us to stay close to her--Ronald McDonald House (one of the finest charities in the world) and making a way for all the bills to be payed. All of this and then some without us having to ask another human... Anyway, if you're reading this and you don't know God, we are not saying that this is an easy road for us so far or a fun one. We're not even saying that if you get to know God, you'll get a free ride in life and won't have to work anymore. We are saying that we have joy and peace in our life that comes only from God and we want you to have it too. We just don't know how we'd get through this life and all it's trouble without Him. Look on the home page for a link or just send us an email and we'd love to tell you about how you can have a personal relationship with our Lord and Savior, Jesus Christ. As our pastor would say, that was free of charge. On to more updates...Cora started to eat without her tube today as a part of her regular meals. Rather I should say, she is obtaining nourishment by mouth as well as through a tube. Hopefully soon she will be making her way off that tube, though we don't know how long that will take. Tomorrow morning she will be having another MRI done of her head. Thank you all for your prayers and well wishes and goodnight.
June 12 Exciting news! Cora was able to take 25cc of milk from a bottle with a regular nipple. The doctors had originally thought that for her to be able to use even a special nipple would take time and training from a speech therapist. Praise the God of miracles! Her next goal is to be able to take an entire feeding which is 85cc. Cora is becoming more alert and active every day. Today she pulled out her OG (oral-gastric) feeding tube--again. One of the many wonderful nurses up on 7 West offered to let us put it back in and Dan jumped at the chance. It was surprisingly easy. Once the tube was down, he pushed a small amount of air from a syringe through the tube into her stomach. A "whoosh" of air that could be heard through a stethoscope was the sign that the tube was in the right place. Cora's head has continued to shrink to a healthier size (another centimeter since yesterday) as can be seen by this picture. She almost looks like a different baby since the surgery. |
June 11 Doctors said that Cora's MRI done when she was at Sherman is less than clear and that they want to do another on Tuesday. A speech therapist should be coming soon to help her learn to drink from a bottle. One of her nurses informed us that her head circumference has decreased by five cm (from roughly 47cm before the surgery to 42cm today). Cora Leigh has been more awake and alert since the surgery as well, sometimes even making little noises. We are so grateful to God that the shunt is doing its job and that He is taking such good care of her. We are also grateful for the wonderful nurses on 7 West! (Yes, we also appreciate the other nurses--on 8NICU and down in surgery.) They are truly the best anywhere. So thank you so much to all of you and especially to Katie and Marcy for the cute little clothes and blankets. Many people have sent notes or posted a message for us saying that God will use this, but we want to say right now that He already is and has been since the beginning and we agree that He will continue to work. He has brought us closer together in our marriage and brought the focus of our marriage more onto Him, He has been teaching us patience (though we have so far to go), He has rallied His people around us to pray and to watch the miracles He does and we believe even to knit us closer together as a body of believers and most importantly He has used our situation to provide opportunities for us and others to witness. Certainly there are more ways in which He is working, so please add ways you see God working to the Guest page to inform us of ways we do not see and remind us of those we have forgotten. Thank you all for praying and the wonderful words of encouragement you send. May God bless you in all you do.
| June 10 What an interesting day today has been. We were able to hold Cora again (we weren't allowed to for 24 hours after the surgery with the exception of a few minutes in the recovery room), we saw some doctors and Cora moved from the Neonatal ICU to the step-down unit a floor below. Plastic surgeons looked at her and told us they'd look at the CT-scans done this morning and come up with a game plan for us tomorrow. We could be looking at starting corrective surgeries for her face in 3 months. All the doctors think that all of her abnormalities in her face and appendages are the result of amniotic banding and not holoprosencephaly. They say the odds of it happening to a future baby of ours are less than 2%. This picture was taken in the recovery room just after Cora came out of surgery yesterday. Thank you so much to everyone who has been praying. |
June 9 The CT scan done two days ago revealed that Cora has only 10% of the brain matter found in most normal infants her size. However, the doctors expect the brain to expand once the fluid has drained and continue to grow, so at this point we really don't know what to think, but we are not alarmed; God is good and He's taking care of our girl. They say the more important test is just to wait and see how she develops, so we really won't be given a prognosis.
Her right eye has been examined by an opthamologist. She thinks there is an eye beneath the confusion, but whether or not it will ever be functional she won't know for awhile. More tests are to be done today while she is still under general anesthesia. The attending physician (neonatologist) does not think that the eye will work. Fortunately, the doctors have been about as accurate as weathermen so far.
Cora came out of surgery today at about 10:30 AM after being in the O.R. for two hours. Praise God that everything went well. The following is a definition from Medtronic, the manufacturer of her shunt.
A Ventriculoperitoneal Shunt (V/P) diverts the cerebrospinal fluid (CSF) from the ventricles in the brain to the peritoneal cavity in the abdomen where the fluid is reabsorbed into the bloodstream. The one-way valve is placed next to the ventricle in the brain and the proximal catheter is placed in the ventricle while the distal catheter runs from the valve down to the peritoneal cavity. A catheter is an extremely narrow piece of tubing used for drainage purposes. "Proximal" refers to the catheter placed in the area to be drained, while "distal" refers to the catheter placed in the area accepting the CSF to be absorbed.
Basically, the surgeons make a small incision in her head and tunnel down into her abdominal cavity where they make another small incision, though I'm not entirely sure of everything they have to do with the drain there. Cora has the latest in shunt technology, hers being the first of its kind that her neurosurgeon has installed (I know that may be a weird way to look at it, but I'm a techie and that's the way I think. Besides, Kari came up with it anyway). The shunt is programmable, so if they have to change the flow rate, they can just use a special magnet.
One of Cora's opthamologists was able to see her while she was under today and said that there was the beginnings of an eye on her right side, but that it was very small and she would probably never be able to see with it. We asked about the risk of infection and predisposition to getting sick and were told that that she would be no more prone to illness or infection than any other child her age.
She had a heart echo and everything looks strong and healthy.
June 8 Today we scheduled the surgery to correct the Hydrocephalus. It will be tomorrow (Wednesday, June 9, at 7 or 7:30 AM). The operation will allow the excess fluid from her brain to drain through a tube called a shunt into her abdominal cavity where it can be absorbed into the bloodstream. The statistics say that the risk of complications is as low as 3-5%. The complications would be either malfunction or infection and the primary risk would be within the first 24-48 hours, though lesser risk still lingers for about three months. Please pray for God's will to be done in this that He would be glorified, that people would be saved and that people would be drawn closer to Him. Also pray for her safety (and our sanity) as the operation is completed and she recovers. Praise God that He as already provided us with opportunites to witness and publicly praise Him in this trial.
June 7 Cora seen by numerous doctors. Doctors are pleased with her strength but are concerned about developmental issues concerning the brain. No time has been set for the shunts to be surgically inserted for draining fluid off the brain. Most likely this week.
June 5, 6 Cora rests at Children's, CT scan done.
June 4 Cora transported via ambulance to Children's Memorial Hospital in Chicago.
June 3 Cora Born, MRI done.
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