- Pray for all families impacted by PBD. Pray that they would know and feel the Lord's peace, hope and strength on this difficult journey.
- Pray that people will be touched and the world changed because of our kids. Pray that lives would be impacted for the Lord because of Ethan (even if we don't see it this side of Heaven).
- Pray for a miracle! Pray for treatments and a cure! Pray for the doctors, researchers, therapists and teachers who are trying to help us help our kids reach their fullest potential.
- Pray that the increase of the dosage of Cystadene would have a positive impact on Ethan and we would see evidence of that in his blood work the next time it is checked.
- Pray that once we can switch back to an algae-based DHA we would see a decrease in Ethan's phytanic and pristanic acid levels back to normal.
- Pray that Ethan would continue to grow, develop and be a happy healthy boy.
- Pray that Jeff and I would continue to seek to honor and please God as we raise Ethan, whom He has entrusted to us.
- Pray that Ethan would be able to get the rest he needs each night and that bedtime would no longer be so stressful or such a fight.
- Pray for the upcoming GFPD Family Support Conference this summer in Orlando, FL. Many families are still trying to raise the money needed to attend the conference. Please pray that all of the families who want to attend will be able to. Pray for Shannon, Melissa and the GFPD Board of Directors as they continue to finalize all of the details.
May 16, 2012
A Good Day
Ethan has his weekly speech session on Wednesday mornings at 8am, so we get started really early each Wednesday. Ethan's recently found mobility (this boy can combat crawl anywhere he wants to go) has been making speech a bit more difficult, so today we put his AFOs on and stuck him in his stander. Ethan did really well, tolerating the stander for 45 minutes! I was so surprised by this since he has given Jeff and I such a hard time about being in the stander. Ethan will just fuss and cry and fling his head back when it is just us. So, we already had a small victory for the day by 9am!
After speech Ethan and I had a good morning here at home. Boy, does this boy LOVE his toys. Despite all the stuff that I struggle with in regards to Ethan's diagnosis and all the things that are just so very hard for him because he has PBD, one of the things that I am so grateful for is that Ethan loves to play. I know that seems like such a simple thing (babies and kids should just naturally enjoy playing, right?) but that isn't neccessarily the case for all children with significant special needs, especially if children have combined hearing and vision loss. So, while I can get discouraged because Ethan is still playing with toys for designed for children 6 months old to a year and almost all 18 month or 24 month toys are way to advance for him, I try to remember and celebrate how much he does enjoy playing and that that is a major accomplishment for a child who has so much to overcome.
In the afternoon we had a previously scheduled appointment with Dr. Smith, a 21 month well-visit, if you will. We were very glad we had this already scheduled since we'd been there on Friday when Ethan was running a fever and although he said it was either just a virus or his teeth, and although the fever has gone away we had a few things we needed to share. 1) we wanted to talk about the rash that Ethan has been developing and 2) we wanted to share about yesterday's appointment with the geneticist and 3) we wanted to again talk about Ethan's sleeping habits.
Before the doctor could see Ethan we were waiting in our room and Ethan began to get really restless. He wanted DOWN and he wanted to MOVE! So, as gross as this is, I took him out into the hallway and let him lay down and crawl around. While I still don't like germs, because we can't take Ethan getting sick lightly, I don't regret letting him play. Several of the nurses came by and played with Ethan and one of the nurses who has been with us from the very beginning of this journey, nurse Karen, played Ethan's "tapping" game with him -- Ethan taps his hands and we tap our hands on the table or ground and then he mimics. He has also started taking turns putting his hand on top of ours and vise versa. Ethan was giggling and having a great time NOT being in my arms.
On Monday, Ethan began to develop what appeared to be diaper rash. On Tuesday morning the rash/pumps/spots were spreading and by Tuesday afternoon, while at the geneticist, it had spread to his torso, arms, and legs. We were freaking out, the doctor and the nurse were pretty calm though.... we discussed that Ethan had just begun taking Walnut Oil last week and that perhaps it was a nut allergy. The doctor thought it was more likely a "viral rash." After talking to my mom and my friend Melissa I was sure it was a nut allergy!! So, needless to say Ethan did not get his dose of Walnut Oil yesterday or today. By bedtime last night the rash/spots were fading some and by this morning it was looking even better. So, I explained to Dr. Smith and he looked at Ethan and thought that is was most likely a "viral rash," and not a nut allergy as well. He is not going to pursue any allergy testing at this time and has instead suggested that we reintroduce the Walnut Oil in about a week or so and see what happens. So, that is the plan!
Dr. Smith seemed saddened as well that we hadn't seen any significant changes in Ethan's blood work but also tried to reassure me about how good it is that his liver and adrenal functions are basically "normal" and that overall Ethan is a very healthy child given his diagnosis. We also talked about increasing the dosage and he thought that sounded like a good plan and he shared with me, as he always does, that I'm a good mom and doing a great job with Ethan. I need that little reassurance every once in a while, because sometimes it is hard to feel that way. Dr. Smith is a great doctor and an amazing man of faith and to know that our doctor is praying for Ethan is so special to us.
When discussing Ethan's sleeping, or more correctly - he's difficulty in falling asleep at night, Dr. Smith agreed that the 2mg of melatonin was an appropriate dose given Ethan's size and suggested that we try a small dose (1 teaspoon) of children's benadryl in addition to the melatonin.
Ethan fell asleep on the way home from the doctor's office and stayed asleep when I transferred him to his crib, which was great because that allowed me to start getting ready for the dinner/fellowship we had tonight at our friends' Todd and Amy's house. In addition to being our friends, Todd is our family's deacon and he had invited all of the families "assigned" to him over for dinner and a time of fellowship. It was a great relaxing evening visiting with our church family. We even found out that one couple had gone to St. Thomas last week to get married! They hadn't told us that that was what they were planning!! Ethan ate well while were were there and he did really well playing with just a few of his toys that we brought along and being in an unfamiliar place with so many people. We did keep his hearing aids out though because it was really loud with so many people and especially all the kids running around.
When we got back home this evening, it was time to get Ethan ready for bed and we decided to give the benadryl and melatonin mix a shot -- I however decided that we'd only do half the normal dose of the melatonin and half of the doctor's recommended dose of benadryl, just to see what affect that would have and if that would be enough to help Ethan get the rest he so desperately needs. After we fixed a problem with the bottle (Ethan was sucking but nothing was coming out) it seemed like Ethan was going to be out for the evening, but then he stopped drinking and was somewhat awake. I went ahead and laid him down in his crib and he cried for about 6 minutes before falling asleep! He was asleep just a few minutes after 10pm! So, we'll have to just wait and see how the rest of the night goes and how he's doing when he wakes up in the morning. I am so glad that we went with a smaller dose!
After Ethan was in bed I checked in with my GFPD family on Facebook and found out some wonderful news. A family who had been told several months ago that their daughter had PBD, was told today that after running further tests that their daughter actually does not have PBD! So, they go back to her being undiagnosed and looking for answers, but we are so thankful that it isn't PBD and are hopeful that maybe it will be something that has some treatment options and isn't a recessive trait related, because the family also shared that they are expecting!!!
Overall, it was a pretty good day! We need those around here.