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.

Monday
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.

Wednesday
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.)

Thursday
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

BECAUSE

"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!

Monday
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. :)

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

Wednesday
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.

Thursday
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.

Friday
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!

Love,
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!

Monday
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.

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

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

Thursday
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!

Friday
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).