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.