January 24, 2013

Sick. Tired. Sad.

It seems like we have been fighting one illness or another since well before Thanksgiving. This most recent illness that began almost two weeks ago with two days of fevers for Ethan, a Sunday morning visit to the doctor, the start of Tamiflu, then the beginning of an antibiotic that led to horrible diarrhea and the worst diaper rash Ethan has ever had, seems to be finally coming to an end. We pray!

Ethan's little bum is healing -- we took him off of the antibiotic on Monday (he started on it on Thursday and finished up the Tamiflu on Friday) after the diarrhea and diaper rash started to get so worrisome that we knew we had to do something to try to stop it. We had been using regular diaper rash ointment, then moved to Triple Paste, but nothing was helping. On Tuesday we talked with the doctor and got Resinol from the pharmacy in addition to starting Ethan on a probiotic. Today was Ethan's first non-diarrhea day since Friday, and the diaper rash still has a long way to go but it seems to be getting better.

Ethan has remained fever free and the boogies and the cough, while still here, seem to be wrapping up as well. We pray that he will soon be completely over this cold/flu/bug and perhaps we can turn a real corner in what has felt like months of being sick. I'm so sick and tired of my little boy being sick and tired.

This morning we braved an hour at STEPS (school) so that he could see the dietitian and the feeding therapist. Ethan got a tiny bit longer, and he had lost a little weight but since he has been sick, that was to be expected. He also made a liar out of me and ate like a real champ for his feeding therapist. He had refused his bottle this morning so I knew he had to be hungry -- he didn't eat anything until almost 9:15 am when we got to school and then after taking his meds with no problem for the feeding therapist he finished off a 4 oz. container of applesauce and a 6 oz. jar of cereal and then took a few more bites of applesauce! Ethan even let her put the Honey Bear straw cup up to his mouth a couple of times -- which he never allows me to do!

Ethan loves STEPS. He was SO happy. He loves his teachers, and they love him! He interacts with the other kids in his own way, and they all seem to tolerate him pretty well. It makes me so sad that he has been so sick this fall and winter and that he has missed so much school and therefore so much therapy. I can tell that Ethan is tired of being home with me all the time. He is tired of his toys and me. STEPS started back on January 8th. He went that Tuesday and Thursday, and was sick by the weekend so he missed both days last week, this past Tuesday, and then we just did an hour today because in addition to him still having a pretty raw bum, we had a neurologist appointment this afternoon and if he had stayed until noon it would have been really hard to get him home, fed, changed, pick up Jeff at work and still make it to the appointment on time. We are praying that Ethan is really getting over all of this, that his bum continues to heal, and that he'll be able to start getting to go to STEPS and get all of his therapy! Ethan tolerates therapy really well, and he will do things for his teachers and therapists that he won't do for me. My boy needs his therapists and teachers -- without them I do not believe he would have made as much progress as he has and I see and believe that he has the potential for more!

This afternoon Jeff, Ethan, and I went met with the neurologist, Dr. K. for the first time. We had only heard great things about her -- several of Ethan's friends see her, and we were somewhat prepared for the visit, but we still left a little sad. Ethan had an MRI back in November when he was sedated for his hearing test. We hadn't heard anything from the ENT about it and so we were hoping that we would learn more today. Well, apparently the hospital only sent the report, and not the actual MRI to the neurologist (who is at a different hospital) so all she had was the report to share with us. We knew in our hearts that Ethan's MRI was almost certainly abnormal now, but hearing it was still hard. I still remember back to when we were at St. John's and they had done so many tests and everything was coming back fine, and we did the MRI and that was fine, and for just a few days we thought we were going to be okay -- Ethan just had hearing loss. Oh, to think if that had been our journey instead of this one....

What does an abnormal MRI mean? In reality, not much. We know that Ethan has PBD-ZSD, and that it impacts the brain. Can we do anything different? No, not really. Does it tell us what Ethan's future will be like? No, not really. At this point Ethan is continuing in his own time and way, so that is what really matters. We understand this disease and we know that many children loss skills at some point, but at this time, that isn't happening, so overall the MRI doesn't really change anything. Ethan will continue getting all of his therapies, we will begin working toward the transition from Early Intervention/STEPS to the public school system for the fall and creating a plan to help him continue to be as happy and healthy as he can be.

Doctor visit days and getting ready for IFSP/IEP meetings are generally pretty tough days because it just makes it all to real. I don't live in denial about Ethan and his disabilities -- I understand that my 2 and a half year old is developmentally around a 9 month old and that I continue to hope and pray that he might someday have the cognitive ability of a 3 year old (yes, those are tough dreams to have, but on this PBD-ZSD journey they are "realistic" dreams -- and yes, it is still very hard for me to accept that my son may never be able to say, sign or use a card to say "mom" or "I love you," things that most children master early on and the majority of parents take for granted) -- have you ever thought about the type of conversations, skills, and independence that a typically developing 3 year old is capable of? From my shoes I see it as INCREDIBLE & AMAZING and I continue to hope and pray that Ethan may someday get there -- but we know that only the Lord knows Ethan's potential and so far He isn't sharing too much of His plan with us.

We are also tired of waiting! Ethan had blood work drawn before Christmas to show us what is happening with his VLCFA levels after being on the new higher dose of Cystadane (betaine) for four months. We asked about the results today when we were at Carle Clinic but they still aren't back yet. Again, we know that this isn't a cure, but if there continues to be improvement in his VLCFA levels, it could mean that it might make a difference in his quality of life and perhaps increase Ethan's potential -- we just don't know. Hopefully we will have some results within the next few weeks.

We are sad for our friends! It has been a tough month for the GFPD family with more little ones leaving the arms of their parents for the arms of Jesus, and many others who are really struggling to keep fighting. And it seems like more and more members of our GFPD family have empty arms and while we know that we have amazing doctors and scientists who want to see real treatment options and someday even a cure for this horrible disease, that possibility still seems so far away. I hate to say it but I'm not sure we will see many breakthroughs even in Ethan's lifetime -- there is just so much unknown and so much to be done.  Other friends in our special needs family (that stretches all over the state, country and world) are experiencing changes in their children as their diseases progress, and our hearts ache and break for these amazing moms, dads, and kids that the Lord has brought into our lives.

In the midst of all the recent/ongoing tiredness, sickness, and sadness we do still have things to celebrate.
  • Ethan is becoming a cruising champ! He pulls up, cruises along the furniture, gets down properly all by himself all day long.
  • Ethan loves to move -- the boy is either crawling or cruising nonstop these days. You will often find us crawling from the living room to his bedroom and back multiple times a day as he pushes his toys from one room to another.
  • Ethan is sleeping so much better than he was six months ago -- this is a real answer to prayer! We feel very blessed that Ethan is asleep most nights by 8:30 (if not a bit earlier) and sleeps usually until 6:30am. So even of the days that he decides he doesn't need to nap (although this mommy thinks he still needs too) at least he is sleeping through the night and getting to bed at a very reasonable time.
  • Ethan likes to have his teeth brushed! Well, not exactly but he doesn't seem to mind it as much as he did. He will even help pull the brush to his mouth and open his mouth to let me put it in. Not sure how clean we really get his teeth, but at least his tongue typically gets brushed everyday.
  • Ethan is tolerating his hearing aids a bit more -- still not great, and our audiologist is working to get him stronger more powerful hearing aids that will provide him with a wider range of amplification so that he should be able to continue to benefit from hearing aids for several more years (unless of course his hearing takes another dramatic loss and he becomes eligible for implantation).
  • Ethan seems happy (for the most part). He enjoys playing with toys, makes lots of happy noises, and seems to enjoy his life. He loves showers, playing with his daddy, visits with his grandparents, smiles and seems to be pretty proud of himself when he learns something new, etc.
Prayer Requests
  • All families impacted by PBD-ZSD especially those whose children have recently passed away and those who are really struggling right now.
  • Families of special needs children around the country and world who do not have access to the services that their children and family need.
  • Jeff and I - that we would stay strong in our faith and love for one another and Ethan; that we would be the parents that Ethan needs us to be; that we would trust God to mold us, transform us, and use us for His will, glory and honor; that we would have a deep desire to draw closer to God when things get tough and we are sick, tired, and sad; that we would be witnesses and that others would see Jesus working in us and Ethan as we go through this journey day by day.
  • Ethan - for a miracle, for healing, for breakthrough treatments and a cure; that he would be as happy and healthy as possible; that he would continue to gain skills and learn - even if it is on his on schedule; that he would tolerate his hearing aids better and maybe even someday glasses if they could help; that he would get over the cold/flu stuff and stay healthy for the winter so he could enjoy school and therapy; that he will be able to continue to get all of the services he needs to help him reach his fullest potential when he ages out of Early Intervention when he turns three.
  • Our finances - raising a child, especially one with special needs like Ethan is VERY expensive.
  • Our future family building dream- we hope to someday to give Ethan a sibling through adoption -- pray that God would be laying the groundwork even now and that He would make things very clear about the situation, and the when and how, etc.
  • Our friends and family - that those who do not know Jesus as their personal Savior and Lord would come to know Him, His love, grace, and peace.

January 12, 2013

Ilan-a-thon! - April 21, 2013 in Baltimore, Maryland

Our family had the honor of meeting Ilan's family this past summer at the GFPD conference. If you live in or around Baltimore, MD and/or have friends and family who do, please share and/or consider participating!

It is our hope that we will be able to plan a Pound the Pavement for PBD 5K Walk/Run event here in our area in 2014 to benefit the Global Foundation for Peroxisomal Disorders (GFPD), but we will need help to make this a reality.

January 9, 2013

Goodbye 2012. Hello 2013!

We are just over a week into the New Year and so far it has been pretty uneventful. We have been spending time as a family and getting ready to get back to the “daily grind” following the holidays. We did have an exciting first on Monday -- Ethan pulled up to stand at the mirror in his bedroom for the first time! I of course didn't have the camera. Ethan also started back at school (STEPS) yesterday which also signaled the start back up of his therapies and the calendar is already filling up with doctor appointments as well.

 I was ready for Ethan to start back up at school. Ethan was sick for the majority of November and December so between missing because of illness, appointments and breaks for Thanksgiving and Christmas, Ethan has had very little therapy for the last two months. Ethan generally tolerates therapy very well and we believe that he would not have, and we pray continue, to make such progress if it wasn’t for his amazing team of therapists (past and present).

2013 is going to be a big year for us in regards to Ethan’s school/therapy with a few changes occurring soon, and many more to come this fall. We are going to be increasing Ethan’s feeding therapy to once a week, starting this month. Ethan is eating purees much better but we has still had very little progress in moving him to more textured foods, self-feeding skills, drinking from a cup, etc. We added feeding therapy to Ethan’s treatment plan several months ago and since we will not have access to exclusive feeding therapy after Ethan ages out of EI this summer, we wanted to take full advantage of the opportunity to have as much help in the next six to seven months as possible for Ethan. The increased services will also provide me with the chance to continue to learn as many techniques/tricks as I can to help Ethan continue to work toward improving his feeding skills.

While we are increasing Ethan’s feeding therapy services, we are sad to say that his occupational therapy (OT) services are going to be decreasing, due to the lack of pediatric occupational therapists serving our area. Ethan has a wonderful OT, and she has been part of Ethan’s team for well over a year, but her case load is overwhelming and the waiting list for her services is in my opinion – disheartening. There are so many children in our community that need OT services but she just can’t see anyone and therefore in order to get some of the children who have been on the waiting list services she has had to cut back on services so that she can see more clients. Ethan has OT at school, and will be going from 30 minutes weekly to 30 minutes every other week. This is of course disappointing since Ethan has significant fine motor delays and other sensory issues that OT is addressing, but I understand why this must be done.

Ethan’s physical therapy, speech, hearing, vision therapy, and dietitian services will remain unchanged for the time being, although in the coming months we will be starting the transitioning process from Early Intervention (EI) to the public school system which will mean LOTS of changes!

Yesterday in the mail I received the booklet, “When I’m 3, where will I be?” from the state of Illinois. This booklet/workbook will help us walk through the transition process from EI to the school system. I will admit that when I read the title I was flooded with different emotions/thoughts. The hope sprung inside of me that said yes, I believe my son will be here with us to see his 3rd birthday and start preschool.  Praise the Lord! I can remember all too well when I did not have the hope/assurance, due to his diagnosis, that we would even get to celebrate a first birthday with Ethan (this side of heaven). Another thought that went through my head was that NOTHING is a guarantee. None of us are guaranteed tomorrow, but when you have a child who is fighting a disease like PBD-ZSD this knowledge and the acceptance of it is so often front and center of your life.

 I thought about the things that I hope and pray that Ethan will be able to accomplish in the next six to seven months prior to his third birthday – standing without any support, walking (even if with the use of his walker), increasing his ability to communicate, increasing his tolerance of his hearing aids (and maybe someday his glasses), continue developing his feeding skills – perhaps be able to learn to pick up and eat Cherrios or puffs and take at least a sip from a cup/straw or even be able to hold his own bottle, and stay as healthy as possible (healthy is a pretty loose term when you talk about children and adults who are fighting horrible diagnoses on a daily basis).

 My heart also broke for so many friends who because of PBD-ZSD or other illness/tragedies do not have the opportunity to “celebrate” this season of transition with their child. Since Ethan’s diagnosis with PBD-ZSD at 28 days old we have belonged to a “world” and “family” that thankfully most people never have to take part in. As much as I wish more people “got it,” I am truly happy that most people don’t “have too.” In the last 2 and ½ years, because of my involvement in GFPD and other support networks for families of children with special needs and/or complex health issues, I have had the honor and privilege of meeting some amazing people. Some of my closest friends are those who I have because of Ethan and his diagnosis/challenges, and I praise God for these women and their families – blessed that we don’t have to be alone on this journey, but I have also seen so many of my “new” friends have to make decisions and experience things that no family should ever have too. My GFPD family and my local special needs community laugh, cry, complain, celebrate, and mourn for and with one another. The bond I have with people that I have known for such a relative short time is nearly indescribable --- we just all “get it” even if the details of our own journey and children’s path/future are different we find comfort, support, strength and friendship from one another in a world that doesn’t for the most part understand us, our children, and the journey we are on.

What is before us in 2013? What challenges? What triumphs? It is hard to say. I do pray that I will continue to always seek the Lord for guidance, wisdom, strength and comfort. I pray that through His power and grace that I would be more joyful this year. I struggle with being joyful. I am not hopeless – as a follower of Christ, I know that there is HOPE. I know and believe that this isn’t it, that this is a “temporary home” and that heaven awaits, but knowing and believe that haven’t in the last couple of years always shown as brightly from me as I hope that they will.
I pray that the Lord would use me for Kingdom work and that the desires He has put in my heart to bring families together, raise awareness for PBD-ZSD, fight for services and programs throughout IL for families of children with special needs, help in bringing the newborn screening for ALD and related peroxisomal disorders (including PBD-ZSD) to Illinois and other states, etc. would be blessed and continue to make a difference in this world.
While I know 2013 will most likely be filled with valleys and mountaintops, I know that God will be with us throughout it all.

Goodbye 2012. Hello 2013!