February 14, 2013

Happy Valentines Day??

Well, I'm not sure I can say we had a "happy" Valentines day, although we did get to spend the day together (since we are all sick).

Ethan has been sick again, for a week and I started getting sick on Tuesday night. And of course, to add to the fun of Ethan being sick he decided to be awake from 3:30-5:30am on Wednesday morning. Yesterday, Jeff took the day off and called his dad to come and help with Ethan so that I could get some rest as well after we all went to the doctor. Ethan and I were really dragging. My poor little guy had goo coming out of his eyes and his nose. His eyes are bloodshot, he wasn't eating or drinking, and was overall very lethargic and just plain miserable. I wasn't doing much better -- crazy headaches, sore throat, body aches, dizzy and nauseous (I think I would have felt better if I could have thrown up), etc. We needed help!

The doctor prescribed some eye drops for Ethan, a different antibiotic (since we all remember how Ethan reacted to the last one) and some Tylenol with codeine for me. We were both tested for the flu, which came back negative, and due to my red sore throat and the drainage she could see, I was tested for strep which came back negative as well.

So we headed home and Jeff's dad got there soon after and he and Jeff were on Ethan duty so I could head back to bed. They did a great job and woke me periodically to double check on medicines for Ethan, etc. Ethan only drank about 6 oz. of his formula and ate only about 6 oz. of his milk/formula all day. :( Around 5pm I woke up and felt a bit better -- I think I my fever must have broke -- as I woke up drenched in sweat, and although my throat still hurt, at least the dizziness and other things were gone. Jeff's parents both came back by in the evening and check in on us and we were thankful that Ethan went to bed without much of a fuss around 8:30pm -- and we followed shortly afterwards.

This morning Ethan was up at 4:30am and was grumpy! He drank 1 oz. of his milk/formula and then just cried and wined. He wouldn't play, wouldn't snuggle, just was miserable. A little after 5:30am he cried himself asleep in my arms and we were able to go back to sleep -- until 7am. When we woke up then, Jeff was now feeling really sick, and ended up calling in this time for himself [although he had already requested a half-day since we had Ethan's IFSP (Individualized Family Service Plan)meeting scheduled for 12:15pm today]. Thankfully last night Jeff's dad had agreed to come over and watch Ethan so we could go to the IFSP meeting and not have to drag our sick little boy with us.

So we spent the majority of the morning getting medicine in, attempting to get Ethan to drink and eat, and trying to get him to be happy. When Jeff's dad got here he took over so Jeff and I could get ready for the IFSP meeting and we headed to that.

It was a LONG meeting -- a little over 2 hours, but overall we came away feeling okay. It is very overwhelming, especially since this is our last meeting with our Early Intervention (EI) team and today it included discussion of transitioning to the public school and had representatives for the school district  present (vision and hearing itinerants). In May we will begin a series of three meetings that will culminate in the writing of Ethan's IEP (Individualized Education Plan).

To sum up the meeting -- besides in the areas of gross motor and social/emotional skills Ethan hasn't made much progress that can be seen by the "numbers" (evaluation tools) over the last six months, although everyone acknowledges that he is doing more now than he was six months ago.

  • Ethan's gross motor skills have exploded (for Ethan) since this summer -- he now pulls up, can climb up onto furniture, crawls on hands and knees, cruises at the furniture, and most recently began taking steps with his walker without the sling! We've still got a LONG way to go before he walks independently or more than a few steps with the walker all on his own, but when we look back at how far he has come since this summer - WOW! 
  • Ethan's social/emotional skills have also improved. His engagement of others in play -- both kids and adults, is so great to see. He has continued to develop his turn taking games/skills and is a very outgoing little boy (when he isn't sick). This is actually were Ethan is "scoring" the highest from the viewpoint of several of the therapists. His hearing teacher placed these skills at right around 20 months -- which is significantly higher than most of his other "scores" that are hovering around the 12 month mark.
  • It is always tough to hear that although Ethan is making progress (which we thank the Lord for and acknowledge that this may not always be the case) that it isn't enough to yet show any improvement when it comes to the "tests" and that he continues to just fall further and further behind because the bar just keeps raising.
  • It is also hard to hear once again that it may very well be time for Ethan to get a feeding tube, to supplement his fluid and nutritional needs, especially during times of illness. Jeff and I have been talking about this a lot in the last several months and have recognized that we are most likely going to be traveling down this road sooner than later. We are in the process of getting a referral for a GI specialist to learn more and begin exploring this topic further. A feeding tube does not mean that Ethan would not be an oral eater anymore, but as you know Ethan has been sick nearly nonstop since the beginning of November, and even when Ethan is not sick and he is eating well, he is almost always meeting just the bare minimum of his fluid and nutritional needs.This one is really tough on me -- not only is it just another stab in my heart about the reality of this disease and how it impacts every bit of Ethan, and our lives, but it would mean SURGERY! Ethan has been sedated twice -- once for an MRI at 3 weeks of age and again just before thanksgiving for another MRI and the hearing test. Sedation alone scares me, but adding surgery to it terrifies me! I know that LOTS of children with PBD-ZSD have feeding tubes (and hundreds of thousands of other children with various different challenges do as well) and that it is a very routine operation, but it is still an operation, which frightens me. Nothing has yet been decided, we don't even have an appointment with a GI specialist set up yet, although we hope that we will be getting one set up soon, but I would like to ask that you would begin praying for us, specifically for this situation and that we would do the right thing by our son, no matter how scared we might be.
  • We also spent a good portion of the meeting discussing the transition from Early Intervention to the public school system, the services we would be losing for Ethan, how we might be able to get some of the services outpatient through the hospital etc. Things are going to be very different come August! The plan is that Ethan will attend preschool five days a week, from 9:00-11:30am. If for some reason they do not have room in the morning session then I'm not sure what we will end up doing because we will not send him to the afternoon class -- it would be pointless he would either sleep the entire time or he would cry and be so cranky and miserable that the therapists and teachers wouldn't be able to get anything productive out of him -- and I'm not going to put Ethan, the school, or myself through that. There are a wide range of special education classes at the school and where he will be placed, will be determined in May/June and this could always change depending on Ethan's skill level and development, etc.
After the meeting Jeff and I came home and found a very tired little boy who was doing everything he could to not fall asleep. It always warms my heart to see Ethan play with his grandparents. He loves his grandpas especially. I wish we lived closer to my parents so they could see him as frequently as Jeff's parents do, but even the distance and time between visits doesn't seem to affect Ethan much because whenever my parents come to visit us or we go to their house it doesn't take Ethan more than a few minutes to "warm up" the them. I think he knows how much his grandparents and great grandparents love and cherish him!

Ethan drank a few ounces of his milk/formula and then laid down for a nap. Jeff let me lay down as well, and I slept about 2 hours -- and felt a little better, although my throat and head are still hurting. This evening we got Ethan to eat a little, got more meds in him, got him showered, he drank about 2 oz. and we got him to bed a bit before 9pm. We are praying that he'll make it through the night tonight!

Jeff now has a horrible sore throat and headache, so I am hoping that he will wake up feeling better, not worse in the morning, since he needs to try to get back to work. I'm hoping that I'll start feeling better as well, and that Ethan won't be nearly as sick and cranky in the morning -- the eye drainage wasn't nearly as bad today so that is hopefully a good sign even if he is still coughing and full of boogies.

Tomorrow morning Ethan and I will venture out into the world to go pick up his new AFOs (braces) and hopefully not infect anyone who comes in contact with us. :)

Prayer Requests

  • That Jeff, Ethan and I would all get and stay "healthy."
  • For families across the country and world impacted by PBD-ZSD and other life threatening medical conditions. Pray for comfort and peace from the Lord for families whose little ones are already in Heaven, and that those who do not yet know the Lord would come to know Him as their personal Savior and Lord. Pray for strength and wisdom for those whose children are still fighting and that the families who do not know Jesus would put their trust in Him and embrace the Hope only He can provide.
  • For wisdom, strength and guidance for Jeff and I as we continue to love and parent Ethan. That God would have His hand on our family and that we would always remember that He is GOOD, even when we don't understand why things are the way they are. Pray that we would be in complete unison and peace with tough decision that we may have to make in the relatively near future about a feeding tube.
  • Pray that Ethan would continue to grow, learn, develop, and enjoy life. That he would be a happy child and that he wouldn't be in pain or suffer. 
  • Pray for a miracle, pray for a cure! Children with PBD-ZSD and so many other diseases need real treatment options and cures this side of heaven, now! Pray for the doctors, educators, therapists, and researchers who dedicate their lives to trying to improve the lives of children with special needs and/or complex medical issues. 





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