December 19, 2010

Sunday 12/19/2010

The overall theme of this past week was COLD! Ethan and I did our best to stay home and out of the nasty weather. Is it bad that I’m already looking forward to spring?
On Monday our dietitian, Jen, came to our house. I am so thankful that our Early Intervention (EI) support team comes to us. This is so wonderful, especially now that it is winter. Ethan weighed in at 15 pounds and 1 and ½ ounces! He was 26 ¼ inches long! Jen was so pleased with Ethan’s progress – his weight is in the “average” range now. We are hoping that if we can keep him healthy and eating that he’ll be able to make it to 20 pounds by his first birthday. We’ve got seven months – I think we can do it.
Since Ethan’s weight was so great, Jen even suggested that we could stop fortifying Ethan’s milk with the soy formula. I decided that instead of completely eliminating the formula that I would simply decrease it and see if Ethan continues to gain weight appropriately. Well, I guess Ethan must have known we were talking about him, because after Monday his intake went down drastically. What a stinker! So, there is no way that we are going to do away with the added formula. He needs all the calories that he can get. Ethan is such a character because he lets his feelings about eating known – he’ll push away the bottle, close his lips tight, or even cry when you bring the bottle near his mouth. Sometimes I’m not sure if I want to cry or laugh. Who would have thought that a child of mine wouldn’t want to eat?
During our visit with Jen we introduced rice cereal/spoon feeding. While Ethan won’t be 5 months old until this Thursday, she wants us to try to begin introducing cereal so he can begin to learn about textures, etc. So, the goal is to try about 10 spoonfuls, once a day (at breakfast). So far I’m not sure if Ethan’s actually eaten any of the cereal, but we have a lot of fun getting very messy. I pray that he’ll get the hang of it.
Monday afternoon we had to go out in the extreme cold to go get Ethan’s 4 month shots. Ethan is actually really good at doctors, with his therapists, etc. but it is so hard for me to see him in pain from the shots or blood work, or whatever it might be.
Tuesday we stayed in. Too cold to even go to our beloved Baby Talk playgroup. Brrr…
On Wednesday we had home visits from our Physical Therapist and our Hearing Specialist. Our PT is great. She really worked Ethan out on Wednesday. She was so excited to see his progress. We are still working on rolling over – yeah, he’s done it a couple of times, but not for probably six weeks or more, so we are trying to play the “roll over” game with him to show him how fun being mobile could be. We are also working on helping him sit with support. She also wants us to continue with LOTS of tummy time. Ethan is getting a little better at this, but he still would prefer that we didn’t do it at all. It is so fun to see him play with his toys. This week he began being able to hold and shake one of his rattles, which is really neat. He also loves to bat at the toys from his play mat.
Our PT and I also discussed Ethan getting his helmet – this is still a work in progress, and his needing ankle foot orthotics (AFOs) in the future to help him with standing/walking. I want to thank all the moms and dads from the PBD parent support group for sharing with me and the other families with young children about their experience and need for AFOs with their kids.
In the afternoon our Hearing Specialist came for her home visit. Ethan seems to enjoy her visits a lot more than physical therapy (who could blame him – the PT makes him workout and he gets to play with his Hearing Specialist.) Julie, our Hearing Specialist, brought a Leap Frog toy (with lights and sounds) that Ethan was able to activate. He had a blast. It is always so amazing to me when I can tell that he “gets it” and is enjoying himself. Julie and I talked a lot about Ethan’s future modes of communication and ways that we can encourage speech and/or sign language. We also discussed the different types of deaf education programs available in our area for when Ethan ages out of EI and begins school.
On Thursday our Speech Language Pathologist, Betsy, came for her visit. We tried eating cereal again, with little success, but Betsey was glad that she could watch and said that we should keep trying. We discussed the importance of reading to Ethan, making sure that he wears his hearing aids every day, and to continue talking to him – she has suggested that we “narrate” the day, explaining to him what we are doing, etc.. She loved seeing Ethan laugh and she is encouraging us to continue to use signs for several words that we use regularly – mom, dad, baby, eat, more, milk.
For lunch on Thursday we once again braved the weather to go have lunch with Jeff. His supervisor at work took us and Jeff’s co-worker and his family out to lunch for an end of the year/Christmas appreciation gift. This was very nice and Jeff’s boss’ wife held Ethan for most of lunch. Jeff is very blessed to work for such a great guy.
Jeff took a half-day on Friday so he was home with us in the afternoon. I got to go to the grocery store and then we went to JC Penney to get Ethan’s 5 month pictures taken. He wasn’t very cooperative and didn’t want to show his beautiful smile off, but our photographer Tiffany (we always request her) was able to catch a smile or two. After pictures we came home and Jeff headed to church to help with the distribution of Christmas food baskets.
Saturday we tried to get a few things done around the house and then took Ethan to his Grandma and Grandpa Marshall’s house to visit while Jeff and I went to a Christmas party at church. We had a lot of fun hanging out with our friends and ate some great food. But, by 9 o’clock it was time to pick up the little guy – I missed him.
Today we had a good morning at church – well, Jeff typically goes to the worship service and Ethan and I go to the nursery – and good afternoon visiting with Jeff’s parents and grandparents.
We don’t have a single doctor or therapist appointment scheduled for this upcoming week! That doesn’t happen that often!!
Prayer requests
Pray that Ethan will start to eat better again and that he’ll continue to gain weight and grow strong.
Pray that Ethan will continue to make progress in physical therapy and speech.
Pray that Ethan will continue to be helped by his hearing aids and continue to learn from all the sounds around him.
Pray for all the families impacted by PBDs.
Pray that during this Christmas season that we truly celebrate the birth of the baby born in a manger who grew to be the man who gave His life on the cross. “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” – John 3:16

December 8, 2010

Wednesday 12/8/2010

Last week was not necessarily very eventful but it sure was stressful. I’m still battling the cold that I must have caught Thanksgiving weekend and Ethan caught from me. He seems to be feeling better this morning, but still seems rather tired. If I could make up the rules for the universe, one of them would be to make it impossible for moms to get sick. It just isn’t good when we don’t feel well, especially when others in our house our sick too!
Monday we had our home visit with Ethan’s Hearing Specialist, Julie. Julie works out of the Illinois School for the Deaf’s Champaign office. She will meet with Ethan twice a month for the next few months and then her visits will increase to once a week. Julie was so excited that Ethan had gotten his hearing aids and was thrilled to hear that he has begun laughing! His laugh, although he doesn’t share it with us as much as I wish, is still contagious. Julie understands our commitment to seeking any means of communication for Ethan – American Sign Language (ASL), oral communication, and/or Picture Exchange Communication (PECs). I am so glad that she understands that Ethan may use one or a combination of all to communicate with us. One very interesting thing that I learned during our visit is about a child’s hearing age. For Ethan, since he received his hearing aids at 4 months, that is when his hearing age begins – therefore when it comes to hearing and speech development in a way he is considered 4 months younger than he actually is. Julie, our Hearing Specialist, Betsy our Speech Language Pathologist, and our Audiologists Brittany and Anna keep telling us how great it is that Ethan was aided so early! I know he is young, but I think it is already helping. When we put his hearing aids in first thing in the morning he begins to look around, as if to say – “Thanks, mom. What will we do today?”
On Tuesday we attended our Baby Talk play group. Only two other families braved the cold weather, but it was still fun.
Wednesday and Thursday Ethan and I stayed at home avoiding the frigid weather and nursing our colds.
Jeff took Friday off as a vacation day and we planned to work around the house, but instead we ended up taking Ethan to see Dr. Smith. Dr. Smith said that Ethan and I were just sharing a cold – boo, but had us take Ethan to the hospital for a chest x-ray just to be sure it wasn’t pneumonia. The chest x-ray was clear – YEAH! After the doctor we headed back home for what turned out to be a really rough night for all of us. Ethan wasn’t feeling well – very congested and it was hard for him to relax and go to sleep. Jeff and I took shifts.
Saturday was another day at home attempting to get rest and get over the colds. We weren’t very successful at either, I admit.
Sunday was a very special day! We had Ethan’s baby dedication at church. Jeff and I are both Christians and we attend a Southern Baptist church. Most Baptists and many other Protestant denominations do not perform infant baptism, and instead practice what is often called “believer’s baptism” for those old enough to confess Jesus Christ as their Lord and Savior. In our denomination we believe that “Christian baptism is the immersion of a believer in water in the name of the Father, the Son, and the Holy Spirit. It is an act of obedience symbolizing the believer's faith in a crucified, buried, and risen Savior, the believer's death to sin, the burial of the old life, and the resurrection to walk in newness of life in Christ Jesus. It is a testimony to his faith in the final resurrection of the dead” (excerpt from the Baptist Faith and Message).
Since we believe that baptism is for those old enough to confess Jesus Christ as their personal Lord and Savior, many families choose to have a baby dedication. This in many ways is a promise that we as parents will seek to raise Ethan up in a Christian home, seeking God’s guidance and direction as we love and raise him. It is also a time to ask our church family to support us in this as they will also have a large role in his spiritual growth. Jeff’s dad, who is an associate minister at our church performed the baby dedication and his grandpa, a retired minister also took part. It was a very special time for us. Our church family has been praying for us from the very beginning when Ethan had to spend a few extra days in the hospital – weeks before we would learn about his diagnosis.

After church we had lunch with Jeff’s family and later in the afternoon went to the mall. Although it was cold, it was nice to get out of the house for a while. The mall was so busy – everyone seemed to be out Christmas shopping.

So far, this week has been much more relaxing, although we are all still fighting this nasty cold. On Monday Ethan had his first consultation appointment for his helmet. On Tuesday my mom came up and we took Ethan back over to Springfield to the Audiologist for a hearing aid check. Ethan has already grown enough that they went ahead and took impressions for new ear molds. They also attempted to do a bit of a hearing test with his hearing aids in to see how it has improved his ability to hear – this was somewhat hard since in addition to still being very young he wasn’t feeling well. They were however able to tell that he was reacting too many of the noises, which was great! Our audiologists, knowing that with Ethan’s PBD diagnosis, his hearing loss may continue to progress, they are going to be very proactive in monitoring it so that we can adjust his hearing aids accordingly. They also know that if his hearing loss progresses to the point that hearing aids are no longer helpful, that we will seek Cochlear Implants.

Since everyone in our house is still sick we’re going to try to take it easy for the rest of the week, because next week is going to be a busy one. Monday we have home visits from our dietitian and hearing specialist and then we have Ethan’s 4 month shots in the afternoon. Tuesday we have our Baby Talk playgroup. Wednesday Ethan has physical therapy and Thursday he has speech/feeding therapy. And, if we have enough energy on Friday we may go to our playgroup at Pershing Early Learning Center. WOW! Next week is going to be crazy!!!

Prayer Requests
Please pray for a little baby named Ellie. She, is about 2 months younger than Ethan, and has a PBD, but isn’t doing very well at all. Please pray for her doctors and family.
Please pray for all the families affected by PBDs.
Please pray that we will seek to fully enjoy the gift of God’s Son this Christmas.

November 29, 2010

Monday 11/29/2010

Getting my hearing aids on my 4 month birthday with my favorite audiologists!
Last week sure was a busy one!

SundayOur church voted in our new pastor - Pastor Tracy will begin in January (this will let his kids finish the semester at their current school, get their house on the market and find a house here). The whole church is very excited!

Sunday night was our annual church Thanksgiving meal. The food was wonderful and we always enjoy spending time with our church family.

Ethan had his 4 month pictures taken at JC Penney's. He sure didn't want to cooperate, and we only got one good smile out of him. :)

Tuesday - Ethan's First Day with Hearing Aids
Jeff took of work and headed to Springfield with us to the audiologist. Ethan's audiologists, Brittany and Anna, are wonderful - see picture :). They are so good with our little guy.

Ethan didn't like it when Anna first put his hearing aids in, but once they were in he didn't seem to mind. Jeff and I were shown how to care for the hearing aids, the proper way to insert/take out and given tons of information to read about ways to help Ethan with his hearing aids/hearing loss.

We struggled at first to get them in and out - Anna had us try several times at the office so that we would feel more comfortable, but it is getting easier.

Ethan and I stayed home today - it was really nasty outside! Our friend Sarah B. came to visit, which was wonderful. A guy with our insurance also came to look at the damage to the car (on Saturday night on our way to church we hit a deer.)

We spent Thanksgiving Day with Jeff's family at his mom and dad's house. It was great to spend time with everyone - especially his family that came in from Florida!

Friday and Saturday
Friday we drove to my mom and dad's house to spend some time with my family. It was so great to see my grandparents and parents and siblings and some of my cousins. We ate way to much and on Saturday spent the day relaxing before heading back to Decatur.

SundayAfter church we had lunch with Jeff's parents and sister and spent some time visiting before going home. It is a real blessing to go to church with family.

Misc. things about the week
Ethan laughed for the first time this week! Jeff heard it first, then I did. Last night we really got him laughing and caught it with the video camera! :)

Overall, Ethan has seemed to adjust to the hearing aids well. He doesn't pull at them, although I'm sure we'll go through that phase at some point. We were also VERY blessed because a state program is going to cover ALL of the initial costs of Ethan's hearing aids! Praise GOD!!!! We had been praying that Ethan would qualify - this is a real answer to prayer!

Ethan didn't have a good week when it came to eating - he never does very well when we are away from home, and we did a lot of traveling this week. Hopefully, since we won't be going many places this week he'll pick back up.

Prayer Concerns/Requests
-Pray that as we are approaching Christmas that those who have lost loved ones will look to Christ for healing, comfort and strength.

-Pray that Ethan and all the other kids with PBDs will remain healthy during the winter and have good appetites (feeding is often a major concern for our kids).

-Pray for strength and wisdom for Jeff and I as we learn how to be the best parents we can be for Ethan.

-Pray that we will always see our kids how Jesus sees them (and help others to see this too)!

"For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth."
~ Psalm 139:13-15

-Pray that even when times get tough we will never forget to..

"Give thanks to the LORD, for he is good; his love endures forever." ~ 1 Chronicles 16:34


"He died for us so that, whether we are awake or asleep, we may live together with him. Therefore encourage one another and build each other up, just as in fact you are doing."
~ 1 Thessalonians 5:10-11

November 19, 2010

Friday 11/19/2010

Another good week!

Ethan and I stayed home and tried to relax! Although this is impossible to do, since he's getting to the point that he doesn't want to nap. He must be afraid that he's going to miss something exciting when he sleeps - like mom doing laundry, dishes, or trying to tidy up the house. :)

Ethan and I went to our weekly Baby Talk Times. I must admit that I look forward to this each week. :)

Ethan had his monthly physical therapy appointment today. She said that if she didn't know his diagnosis she'd think he was a "normal" 4 month old!!!! Yeah, we are still working on head control some, and strengthening his core, but she was very excited about the progress he is making! :) She has also recommended that Ethan get a helmet, so we are going to
begin that process soon.

Ethan had a swallow study done at the hospital in the afternoon. I was glad that Jeff was able to take time off from work to come with us.

The purpose of the swallow study was to determine if Ethan was aspirating some of his milk - eating is still tough for him and he often chokes and coughs during his feedings.

Thankfully, the test came back ALL CLEAR - no signs of aspiration. We still have to be careful that he doesn't become tired during his feedings because it seems that he has the most trouble when he is fatigued.

This morning we went to the infant play group at Pershing Early Learning Center. Today's guest was a sign language interpreter. Although I already knew most of the signs she taught the group (I've been learning sign since we found out about Ethan's hearing impairment) it was still neat!

In the afternoon Ethan went to Dr. Smith for his 4 month check up!!! I can't believe it has already been four months (on Tuesday). We were hoping that he would weigh at least 13 lbs. and he weighed in at 13 pounds and 5 ounces and is 25 and 3/4 inches long.

I had several concerns that I shared with Dr. Smith, and overall he told me things were fine. I'm still a bit concerned about a few things, but I think that will be the continual nature of this beast of a disorder.

Dr. Smith seemed really pleased with how Ethan was presenting to him. All the doctors and therapists have been saying that he's doing better than expected, so we are feeling very blessed.

Next weekNext week will be another busy week. On Monday we are going to have Ethan's 4 month pictures taken. We get his portraits taken at JC Penney's - they have great coupons!!! On Tuesday we are headed to Springfield to get Ethan's hearing aids - Jeff gets to come with! Yeah. :) Wednesday we might just try to relax before the big Thanksgiving holiday. Thursday we will spend the day with Jeff's side of the family and get to see his family, including some cousins we haven't seen in a while. Friday we'll travel to my parent's house to spend some time with my side of the family. By the time that we make it back to our house on Saturday evening we will be very full of turkey and most likely very tired! :)

Prayer Requests

-Pray for Jeff and I to have wisdom when it comes to Ethan's health. When do we call the doctor, when do we just chill out - that's just a normal baby thing :)
-Pray for Jeff and I to enjoy and celebrate each day we have with Ethan, the good days and the not so good days. Pray that we will have the strength we need if/when things get really tough.
-Pray that Ethan will quickly adjust to his hearing aids and that he will LOVE them. We pray that increasing his hearing from such a young age that this will help his development and enjoyment of the world around him. Please pray that his hearing aids do not get broken or lost.
-This week one of the leading researchers of PBDs died. Please pray that the Lord will raise up additional doctors with a heart for understanding, treating, and curing PBDs.
-Pray for the families that are just learning about their child's diagnosis, we've had several new families join our parent group in recent weeks.
-Pray for all of the children and families impacted by PBDs.

Thank you for your continued thoughts and prayers. We hope that everyone has an enjoyable Thanksgiving!

Jeff, Pamela and Ethan

November 14, 2010

Sunday 11/14/2010

Overall we had a pretty good week!

Saturday and Sunday we got to visit with Jeff's family. His brother and his wife and two kids were in town. It is always good to visit with them. My sister-in-law is a physical therapist (and used to work with Early Intervention) so I always ask her tons of questions about Ethan's development when I see her. :)

On Monday morning Ethan and I got to meet with our new friend Vicky. Vicky and her husband have two beautiful children, the youngest has a PBD like Ethan. She lives about 2 hours away, but was in Decatur for a conference! It was a great visit and we both look forward to getting our whole families together sometime soon.

Monday afternoon Ethan and I went to visit the Pittman family. I've been friends with them for many years and enjoyed catching up. There two and a half year old little boy is very precious and seems excited that he's going to be a big brother ;).

Tuesday morning Ethan had his appointment with his Speech Language Pathologist (SLP). It was a good visit and she said he's doing alot of what he should be doing at 3 1/2 months. She is very excited that Ethan will be getting his hearing aids soon. She continues to work with us on feeding - Ethan can get really tired sometimes when he eats - it is just hard for him.

We then went to Baby Talk Times. I am really enjoying this play group! Its not like we do anything special, just share about our kids and then we sing songs (with signs!!!) at the end, but it is really nice. It is so nice to have something to go to that is not a doctor or therapist appointment. ;)

After Baby Talk we went to the library and then had a great visit with my Grandma Chambliss and her boyfriend. They were both excited to see Ethan again!

Wednesday morning we attempted to get blood drawn for some routine liver function tests. The hospital was so busy and after waiting an hour Ethan was tired, cranky and hungry. So, we decided to leave without getting his blood drawn (when it was finally our turn they didn't seem like they could find the veins very easily, and I didn't want them to turn Ethan into a human pin cushion.)

Thursday we headed back to the hospital to try again. This time we were in and out within a half and hour. Ethan did great - he cried during the blood draw of course, but was fine once it was over and I could hold him :).

Friday we got two emails from Ethan's geneticist. One said that he was pleased with Ethan's blood work - nothing was headed in the wrong direction! AMEN!!! The other said that Johns Hopkins had found the second mutation - which most likely confirms that Ethan has NALD (the moderate severe form of PBDs) - with this disorder there is no real way to say for certain where on the spectrum someone will be. We are not going to let this set a limit on Ethan though and we know that only the Lord and Ethan will be able to tell us what Ethan will achieve.

Saturday was a good day of getting stuff done around the house and in the afternoon my dad came by for a visit. Ethan loved spending some time with his grandpa and we are excited that we'll get to spend more time with my parents and family in two weeks. Following my dad's visit we attended a party for our friends who were welcoming to thier family a beautiful foster son.

Today we've been to church and have spent a restful afternoon at home as a family. :)

This next week is going to be a busy one: Ethan will see his PT, have a swallow study done at the hospital, and have his four month checkup.

Please pray for strength for families who are just learning about their child's diagnosis. We've had several new families join our parent group in the last week. Please pray that we will lean on the Lord for strength and look to Him for guidance as we raise our very special little ones. Pray that we do not get discouraged and that we never put a limit on what our kids can do!

November 5, 2010

Friday 11/5/2010

It has been a busy week!

Ethan saw the dietitian and the developmental hearing specialist. The little guy weighed in at 12 lbs. and 3 1/2 oz. and was 24 and 3/4 inches long. YEAH! Ethan played with the hearing specialist and we are looking forward to meeting with her two times a month. She'll see him again near the end of the month after he gets his hearing aids.

Ethan and I went to our first Baby Talk Times (playgroup). This was great - something very "normal." We plan to go back.

We had a play date with friends! Yeah, I was so glad that we got out and did this. :)

Ethan and I went to Springfield to see the Audiologist for another ABR and his hearing aid evaluation. He slept long enough to get another complete ABR!!!! This was so great, because it allowed them to get a more complete picture of his hearing loss. At this time, he has moderate loss in both ears (hearing loss is measured on a scale - mild, moderate, severe, profound). Following the ABR they made ear mold impressions for his hearing aids - which will be a very nice blue color - that he'll be getting on the 23rd. I am very excited that we'll be able to get hearing aids on him so soon - the sooner the better when it comes to development!

Jeff's parents came over to visit in the evening and they got to see Ethan roll from his tummy to his back! I was so excited because although that was the 4th time he'd rolled from tummy to back, Jeff and his parents had never seem him do it before! I am so proud of our little guy!

We went to the infant play group at Pershing Early Learning Center (where Ethan will go to preschool - when he's older). There was only one mom and her son, a very cute 2 month old, there, but we had fun anyway. It was nice to get out of the house and to talk to another mom of a little one.

This weekend Jeff's brother and his wife will be visiting with their two little ones, so we'll have lots of great family time!

Monday I'm going to get to meet another mom whose little one has a PBD. I'm so excited about meeting my new friend in person.

Please continue to pray for all of the children affected by PBDs. Please pray that they will be able to avoid major illnesses this winter (getting sick is really tough on our kids).

October 31, 2010

Sunday 10/31/2010

So, last night our little guy suprised us! He rolled from his back to his belly, and we both missed it!!!!

Jeff and I were both in the room - Jeff was watching T.V. and I was working on thank you cards, and Ethan was playing on a blanket on the floor. He was on his back, I looked away, and then he was on his belly!!!

We were so shocked. We couldn't believe it! So, of course we spend the rest of the night staring at him hoping that he'd do it again, but of course he didn't.

Ethan has now rolled from his belly to his back 3 separate times, although he hasn't done it in several weeks, and from his back to his belly once, yesterday.

I know that I may not always be able to say this but --- "Take that PBDs! You aren't going to tell us what our kids can and cannot do."

October 29, 2010

Friday 10/29/2010

Great news from the doctor today! Ethan weighed in at an amazing 12 lbs. 1 oz. Way to go, big guy! Okay, so we know that isn't really a lot for a 3 month old to weigh, but for us, its HUGE! Also, Dr. Smith feels that Ethan is doing so well that he doesn't need to see him for three weeks, not until his 4 month checkup! This is great!

Next week is going to be a busy week. Monday we'll have our regular monthly visit from the dietitian and an evaluation from the developmental/hearing specialist. Tuesday we are going to go to our first Baby Talk Times. Wednesday we are going to try to visit some friends here in town. Thursday we have another ABR and the hearing aid evaluation with our Audiologist in Springfield. Friday we are going to go to our first infant play group at Pershing Early Learning Center. I'll let everyone know how the week turns out. :)

Ethan is going to have a swallow study soon, since he's still having some difficulty with feedings, but that hasn't been scheduled yet. We'll keep everyone updated.

This week, please pray for the families of PBD kids everywhere. It's been a tough month for the PBD family, as two little ones are now in the presence of our Lord. Although we can take hope from knowing this, please pray for comfort and strength for the families who have lost their precious children.

"For God so loved the world that he gave his one and only Son,that whoever believes in him shall not perish but have eternal life."
-John 3:16

"Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them."
-Hebrews 11:16

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." (in Heaven)
-Revelation 21:4

October 22, 2010

Friday 10/22/2010

Ethan and I were blessed to get to spend the day with Jeff. He took a vacation day to spend with us. :)

We started out the day at the doctor's office for a weight check. Ethan weighed in at 11 pounds and 7 ounces. He gained just 5 ounces in the last 2 weeks, so Dr. Smith wants him to come back next week to check his weight again. We had just went to checking every other week.... We have to continue to monitor this because as with many PBD kids, eating/drinking and getting adequate calories/nutrition can be a huge challenge.

After the doctor's office we went to CAT to introduce Ethan to Jeff's co-workers. Ethan seemed to enjoy being the center of attention, until he had enough, and then it was time to go! :) We then made a quick stop at New Life Pregnancy Center, where I used to work, and saw the ladies there.

Then it was off to the pharmacy to pick up the prescriptions and then home.

In the late afternoon we got to visit with our friend Sarah B. who was home visiting from the Chicagoland area where she is serving God as a missionary and campus minister. Sarah, thanks for visiting and for all the prayers. I think Ethan enjoyed the visit from "auntie" Sarah. I know I sure did.

Please pray that Ethan will have a big appetite, that he will be able to eat without difficulties, and that he will continue to gain weight and grow properly.          

October 21, 2010

Thursday 10/21/2010

Today is going great! This morning Ethan had his monthly visit from his Physical Therapist. She is great with him and after playing/evaluating him today had great news - she said Ethan is making significant progress and that if she didn't know his background that she'd think she was looking at a "normal" 3 to 4 month old! YEAH, we are catching up!

She has given me some new exercises to work with Ethan at continuing to strengthen his neck muscles which will help him with head control. Increased head control should also help him with his eating (he still has some difficulty with this at times). He is also supposed to continue LOTS (ideally 2 hours a day) of tummy time.

The PT is also going to start the paper work with insurance in case Ethan gets a helmet. She said he still has a little bit of time before we would have to make a decision about the helmet and we will wait until he gets his hearing aids, so that way the helmet can be fitted around those.

I'm just so excited about the report from the PT. :) I know that Ethan may progress at his own rate, but progress is progress no matter what!

Way to go Ethan! Today's news was an answer to prayer. We love to hear good news.

Please continue to pray for Ethan's health and for him to continue to grow and develop. Please also pray for all the other PBD kids and that a treatment and cure will be found for these disorders.

August 1, 2010

My First Bath at Home - 8/1/2010

I had several baths at the hospital, but here I am all wrapped up after my first bath at home. Mommy and Daddy seemed so nervous giving me a bath, but all I could think was, gee... I'm cold!