The cleft clinic visit is behind us! Esther Marie was once again her sweet little self, smiling and laughing, while she saw each specialist...such a little trooper! Giving her food kept her happy too! It went very well, but I was emotionally overwhelmed and exhausted when the day was finally over. Actually, "fried" is probably a better term for how I felt. I was in "information overload" mode and totally feeling like I don't want my kid to have to go through all this! Most parents would say, if I could take her place, I would..so she doesn't have to go through it all. Of course, she does have to go through it all...it's necessary!
We were there at the hospital clinic for FOUR hours! Whew! We got there around 8:00 and were done by noon. I will tell you though...there was a lot of WAITING! We had three children with us....Hannah was at an all-day event for the 6th graders. (Thanks to Susan and Evie for letting her spend the night and for giving her a ride!)
While at the clinic for cleft lip/palate, we saw the nurse, the audiologist, the speech therapists, the genetics doctor, the surgeon, the surgeon's assistant (Dana), and the ENT doctor. Here's what we found out:
Esther Marie saw the nurse first and weighs 24.2 lbs. (11 kg), is 32-1/4" tall and her head circumference is 49 cm. She has either lost weight or the other IAC clinic's scale is off a bit. She weighed over 25 lbs. there. She weighs 23 at home without clothes.
The audiologist told us that Emmie's ears are still clogged with wax and she can't hear low tones. It might be hearing loss or it could be caused by the wax. We will have to wait until the wax can be cleaned out to find out. She'll be tested again after the surgery.
The speech therapists asked questions and they both told us about an early intervention program that we should try to get her in. They talked to us for awhile about speech issues and said they would see her after she recuperates from the palate surgery.
The genetics doctor had some questions for us and didn't see a need to test for any genetic issues. That was good news. (He had concerns with Joshua when we got him and we had two expensive tests run, looking for certain syndromes or birth defects. The tests were negative...thank God!)
The surgeon for the cleft repair (Dr. G) explained how he will repair Esther Marie's open palate. There will be repair of the soft palate, the harder palate and the muscles. There's a lot of cutting. Her little mouth will be held open for quite awhile during the surgery. (Joshua's face was SO swollen after his palate repair.) The surgery is more complicated than you realize. Dr. G drew a diagram to help us understand. He also examined Emmie's fingers and found that one needs surgical repair. There is a scar that is causing one of her pointing fingers to curve and without repair, the curving would get worse. He will make a series of cuts to release the skin. The surprising thing is that he didn't think the damage was caused by the ant bites, but by something else. We are not sure what since we don't have any information about this injury.
Dr. G's assistant, Dana, told us all the details of the surgery and the recuperation period. Emmie will have to wear arm restraints but only for two weeks. I had initially read it might be four or more. We both think two weeks will be hard enough since she is older and more active. It is going to be very frustrating for her (and for me, I think). She has to wear them to keep her arms straight so she won't put anything inside her mouth that will damage her repaired palate. She will need to stay on a diet of very soft foods for four weeks.
The ENT (Ear, Nose and Throat) doctor confirmed that Esther Marie does have a bunch of wax build-up close to her ear drum. He will have to remove it while she is under anesthesia. Then he will examine her to see if there is any fluid build-up in the inner ear. If there is, he will place tubes in her ears to assist with drainage of the fluid. This needs to be done to prevent hearing loss.
Through out all of this, Esther Marie was doing great! She played games with the doctors and people she saw and wanted to be held by them. She is such an outgoing little girl and I'm glad for that! Although we do have to be careful about how many people hold her because it hinders her bonding with our family and confuses her about who her parents are.
Surgery is still set for August 20th...at 1:00 PM. We have to be at the hospital by 11:00 AM. Her palate repair will take 2 to 2-1/2 hours. Her ENT will only need 15 -30 minutes and it will take around 45 minutes - 1 hour to repair her finger. This is a total of about 3 to 4 hours. The starting time for the surgery could change depending on the doctors' schedules, and we will update you if it does.
After lunch on Thursday (Esther Marie slept and got a good nap), we went to another hospital facility so blood work could be done. This was the worst part of the day. I let Jasper hold her while the blood was being drawn so it wouldn't affect her bonding with mommy. MaryAlyce, Joshua and I waited in the waiting area. She came out soaked with tears, but was running down the hall toward me clutching two stickers and she had a big smile on her face. Praise God! (Jasper said she screamed her head off while they drew about 6-8 tubes of blood.)
Thanks for all of your prayers! We made it through a rough day and have more to come but God will see us through it all and your prayer DO help!
We were there at the hospital clinic for FOUR hours! Whew! We got there around 8:00 and were done by noon. I will tell you though...there was a lot of WAITING! We had three children with us....Hannah was at an all-day event for the 6th graders. (Thanks to Susan and Evie for letting her spend the night and for giving her a ride!)
While at the clinic for cleft lip/palate, we saw the nurse, the audiologist, the speech therapists, the genetics doctor, the surgeon, the surgeon's assistant (Dana), and the ENT doctor. Here's what we found out:
Esther Marie saw the nurse first and weighs 24.2 lbs. (11 kg), is 32-1/4" tall and her head circumference is 49 cm. She has either lost weight or the other IAC clinic's scale is off a bit. She weighed over 25 lbs. there. She weighs 23 at home without clothes.
The audiologist told us that Emmie's ears are still clogged with wax and she can't hear low tones. It might be hearing loss or it could be caused by the wax. We will have to wait until the wax can be cleaned out to find out. She'll be tested again after the surgery.
The speech therapists asked questions and they both told us about an early intervention program that we should try to get her in. They talked to us for awhile about speech issues and said they would see her after she recuperates from the palate surgery.
The genetics doctor had some questions for us and didn't see a need to test for any genetic issues. That was good news. (He had concerns with Joshua when we got him and we had two expensive tests run, looking for certain syndromes or birth defects. The tests were negative...thank God!)
The surgeon for the cleft repair (Dr. G) explained how he will repair Esther Marie's open palate. There will be repair of the soft palate, the harder palate and the muscles. There's a lot of cutting. Her little mouth will be held open for quite awhile during the surgery. (Joshua's face was SO swollen after his palate repair.) The surgery is more complicated than you realize. Dr. G drew a diagram to help us understand. He also examined Emmie's fingers and found that one needs surgical repair. There is a scar that is causing one of her pointing fingers to curve and without repair, the curving would get worse. He will make a series of cuts to release the skin. The surprising thing is that he didn't think the damage was caused by the ant bites, but by something else. We are not sure what since we don't have any information about this injury.
Dr. G's assistant, Dana, told us all the details of the surgery and the recuperation period. Emmie will have to wear arm restraints but only for two weeks. I had initially read it might be four or more. We both think two weeks will be hard enough since she is older and more active. It is going to be very frustrating for her (and for me, I think). She has to wear them to keep her arms straight so she won't put anything inside her mouth that will damage her repaired palate. She will need to stay on a diet of very soft foods for four weeks.
The ENT (Ear, Nose and Throat) doctor confirmed that Esther Marie does have a bunch of wax build-up close to her ear drum. He will have to remove it while she is under anesthesia. Then he will examine her to see if there is any fluid build-up in the inner ear. If there is, he will place tubes in her ears to assist with drainage of the fluid. This needs to be done to prevent hearing loss.
Through out all of this, Esther Marie was doing great! She played games with the doctors and people she saw and wanted to be held by them. She is such an outgoing little girl and I'm glad for that! Although we do have to be careful about how many people hold her because it hinders her bonding with our family and confuses her about who her parents are.
Surgery is still set for August 20th...at 1:00 PM. We have to be at the hospital by 11:00 AM. Her palate repair will take 2 to 2-1/2 hours. Her ENT will only need 15 -30 minutes and it will take around 45 minutes - 1 hour to repair her finger. This is a total of about 3 to 4 hours. The starting time for the surgery could change depending on the doctors' schedules, and we will update you if it does.
After lunch on Thursday (Esther Marie slept and got a good nap), we went to another hospital facility so blood work could be done. This was the worst part of the day. I let Jasper hold her while the blood was being drawn so it wouldn't affect her bonding with mommy. MaryAlyce, Joshua and I waited in the waiting area. She came out soaked with tears, but was running down the hall toward me clutching two stickers and she had a big smile on her face. Praise God! (Jasper said she screamed her head off while they drew about 6-8 tubes of blood.)
Thanks for all of your prayers! We made it through a rough day and have more to come but God will see us through it all and your prayer DO help!
2 comments:
Wow! That was a long but good report on what all is going on mediacally with little Emi. We will be praying with you guys for grace and healing through this medical process. May Jesus strengthen all your hearts as you love and support little Emi. We want to stand with you.
We really are looking forward to meeting you all again one day soon!
We are proud of you and deeply touched by your committment to your children!
love,
Annette and Daniel
Praying for her.
B
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