Yes, we have our challenges, and I will not deny that fact. Raising a child with special needs is a challenge; it is a joy, but don't get me wrong...it is not easy. Words like 'age appropriate' or 'developmental delay' are always in the mist, but we have chosen to ignore those to the best of our ability. Although, we have both ends of the NICU preemie spectrum in our home. We are told by the doctors that Kennedy is ahead of where she should be for her adjusted age, while at the same time being told Drake is preforming at a newborn to 3 month level. Oh they do say things like, "Drake is doing much better than we would have expected." Well, to us that sounds positive for both of our kiddos.
Is it frustrating to have to physically go through a list of activities that must be done for your child multiple times each day? At times, yes. However, it is more frustrating that doctors don't see the potential that he has that we see daily. We take it as an attainable goal just to be able to blow them away at our next visit. When we can see the "shock" on their face, we hold in our excitement until we get to the car. Once the doors are closed, Lisa (Drake's nurse & I) literally do a squeal of joy and an in their face high-five!
Speaking of impressive, our little man has been rocking it out of the park lately! He finished another entire bowl of oatmeal with his speech therapist today. I have been working with his physical therapist as well as his pediatrician to get him a stander. The paperwork is processing and we are excited with anticipation!!! We can't wait to see what he is able to do once he can really be up and in the mix of daily life. Being limited with his head/trunk control is frustrating for him, and we can see that. Brian and I were very pleased with how well he did with his new big boy car seat. He was getting far too big for his infant car seat, so we moved on up to the next size. Both Drake and Kennedy seem to love the change!
Speaking of Kennedy, she has over 25 words that she says on her own...not to mention the fact that she will repeat EVERYTHING that we say, and I do mean ANYTHING and EVERYTHING! She is a mess! With all of the words that she can speak, it is even more amazing that she comprehends even more than she can verbalize!