Not too much to report

The new year hasn’t brought too many new things for Warren. I guess that can be a blessing. He continues with about 7 therapies a week, as we try and work on several things: core strength so he can sit up; using his right arm and leg, as his damage is on his left; simple commands like “hand Mommy the block”… sometimes it seems so overwhelming to try and get all of his needs met that I feel like I don’t get anything done. Ugh. I’ve had some Mommy guilt lately when the day comes to an end and I think, did I do enough with him today? I know that all moms whether having special needs children or not have that same thought. I’m working on it, though.

Our biggest task at hand right now is on feeding. Warren has had a feeding tube since his injury in March. Almost 9 months with no oral feeding. It puts knots in my stomach. I feed him a little cereal every day, but it’s so very difficult. We’re in the process of getting a feeding specialist but as with everything in this miserable process, who knows how long that will take? We ordered a stroller almost 4 months ago and still don’t have it. CRAZY! I’m just stubborn enough to be a voice on Capitol Hill one day, but when will I find the time? LOL!

No recent appointments. We have three at Duke next month… neurologist, developmental pediatrician, and our first visit with a neuro-ophthalmologist (Warren’s brain damage is centralized around his vision). I’m enjoying a month with no rides to Durham! Time to get him changed and ready for our vision therapist… so glad it’s Friday with two days off from therapies! Funny the things I look forward to now! Blessings to you all…

Amy you are marvelous. You are amazing as a mom and a person. You do just as much work as Warren and are adept at this situation…makes it difficult on you to be so good at all of it, yes ? I am impressed that you find the time to remember to breath…So after vision therapy perhaps you might simply find a quiet place to hide for a minute or two and just breath…
A lovely dream I have for you, yes ?? Be good to you. Take care of you. IMPOSSIBLE to do ? NECESSARY to do !! Yes on both counts-not only for Warren and everyone else-but for you as you are important in this world and you may well have a calling to get up to capital hill…Serious consideration should be given to that scenario. Who better than you knows this circumstance???
I hope the days are as good as they can be and get better…You are all in my thoughts and prayers. Hugs all round (and an extra to that gorgeous little lad). …

I know how you feel. There are days with not just Nico (my other children) that I feel and think “did I do enough?” But trust me it is enough…its a sign that we are good mothers! My heart goes out to you and your little one. Just know that there are other mothers who are struggling with the same issues. For a long time I felt a lone with Nico’s condition till I found this blog and it has been so helpful.
Prayers to you-
Mickie & Nico

My goodness… You say that like it is nothing and not enough?? I don’t think so!! It sounds like you are doing so much so well and you should be so proud of yourself in handling all this. Why does a stroller take so long!?! And I would think a swallow specialist for a little baby would have some priority. How frustrating. Thanks so much for the update. I hope Warren continues to improve. He is just so gorgeous in that photo. take care Amy.

don’t be hard on yourself…you are amazing…and are doing everything in your power to resolve this situation…stay strong and take time for you too…you are in my prayers

Try not to be so hard on your self, Amy. Marianne is right…you do need to take a breather for yourself once in a while.

I understand what it’s like having such a sick child. My daughter was a preemie…10-1/2 early. When she finally came home she was on an apnea monitor and every time that alarm went off, my heart was in my throat. She is now a healthy 20 year old who loves to drive us nuts! :slight_smile:

My son, Michael, was diagnosed with cystic fibrosis at four months old. For so many years I was so terrified that I was going to lose him. You h ave to take a little time for yourself to be a better parent to your child. Otherwise you get totally frazzled and pass your fears on to your child.

Amy don’t beat yourself up, Marianne is right you need some you time as well. You do a wonderful job with Warren.