May 1, 2008 - Time goes by so fast!

Hello everyone,

Can you believe that Emily is now 6 months old? Well, actually, it has taken me so long to sit & write this update, that she is going to be 7 months old in about a week. My how the time flies! I know we have not been as diligent about sending updates and we have heard from some of you about that. Well, it has been a little busy here, and some days we are just in survival mode. If all three of us make it through the day that is a good thing! Anyway, enough of my excuses…

Emily is now 14 lbs. 6 oz. and 25 ¾ in. long (maybe more by now since those measurements are from a couple of weeks ago). She is getting long and lanky now. The pediatrician and the nutritionist were very happy with her weight gain. We have not had as many issues with her feeding as we did in the past. The pump is really working out at night, but the goal is to eventually get rid of that. So we have been increasing her day time feeds. We have to do this very gradually to give her time to adjust, but so far she is up to 4 oz. 3 times a day & then her nighttime feed (which is still the majority of what she eats all day). Mike has also started working with (somewhat) solid foods: rice cereal & applesauce, bananas, peaches & even carrots, which were NOT a big hit. Truth be told, she tends to wear more than she eats, but there is progress. The fact that she will take anything by mouth is a HUGE step.

Along those same lines, she is loving her pacifier these days. Sometimes she just likes to chew on it rather than suck on it (OK most of the time), but it has been great to see her interested. For so long she wanted nothing to do with the pacifier. She doesn’t quite know how to hold in her mouth, so you have to hold it for her, but one step at a time. She has also started finding her hands to chew on – it seems more accidental than anything, but she is pretty good about chomping down when she can. Of course she will also do that to our hands or the couch cushion or just about anything else that gets near her. We are pretty sure she is teething these days. She has definitely been drooling up a storm! We have tons of wet bibs, burp cloths & outfits to prove it! And there have been many days when she has just been a joy to be around (insert sarcastic smirk here). It has actually been very stressful for all of us because she has been pretty MISERABLE. She has had some lengthy crying fits where she is inconsolable, so it has been difficult at times.

She is definitely revealing more & more of her personality. And she is quite feisty! She lets you know when she doesn’t want to do something (like tummy time, but more about that later…). She has started to vocalize a little bit. Sometimes she just likes to hear herself make noise and sometimes she wants to let you know something (I don’t want to be in this chair anymore, I am ready to get out of bed, etc.). She has laughed quite a few times (usually when Mike is tickling her). And by the way, she is pretty funny when she has been tickled. Her arms and legs go straight up in the air & are stiff as a board – it is pretty comical. Well anyway, her laugh isn’t a hearty laugh, just little noises. She really only makes one sound: aaaah. That is the noise she makes when she laughs, when she is just trying to be heard & when she is about to cry. So needless to say it can be a little tricky to decipher what she wants/needs.

She cannot roll over, but manages to move herself around the crib or on the floor. She basically “walks” with her bum (and her feet too). I secretly believe that she is practicing for visits to the dentist that will come later in life – you know what I mean, I am sure you have walked with your bum when they come at you with that sharp metal pick! She manages to spin herself around on the floor so her head ends up where her feet used to be & vice versa. This little trick is also what gets her wedged into odd spots in the crib. She seems to only be able to do this in one direction because she pushes with her feet. So once her head is against the bars of the crib, she cannot go in the opposite direction & get herself out. At times, we get her up after a nap & she has stripes across her forehead from the crib bars (She really doesn’t seem to like her head pressing against wooden bars, go figure – that would be one of those times when she “vocalizes” loudly).

She is making some progress with holding her head up. When she gets tired her head lunges forward rather quickly so we have to be careful. I have gotten used to turning my face so her head hits my cheek. That way she doesn’t get hurt & I don’t get a fat lip. She doesn’t quite have a handle on sitting up on her own. First, her head gets pretty heavy. Second, her body is pretty stiff and rigid so it is a struggle to keep her legs bent. Mike does exercises with her every day & he is great at it! He finds new and interesting ways for her to do her tummy time without her even realizing she is doing it (she HATES being on her tummy). But his creativity has helped her to make some great strides with lifting her head & building up those muscles. The physical therapist also comes once a week now, so she checks on Emily & gives Mike new exercises to do. They work on getting Emily to roll over, to hold up her head, to bear some weight on her hands or feet and to stretch her muscles.

Emily also had an appointment with the neurologist this month. He was hoping to take her off Phenobarbital (her seizure med) because it has a sedative in it & can hinder her learning. But first, he wanted to do an EEG to check the seizure activity in her brain. She had the EEG Tuesday & the doctor said she does still have seizure activity. So he recommended switching her meds to one that does not sedate her, it is called Keppra. She has actually taken it before in the NICU. So for the next few weeks she will be weaned off Phenobarbital & started on Keppra. My only concern with this medicine is that in the NICU we were told that it could make her irritable. One of the issues with the damage to her brain is it can make her irritable so this medication may add to that – we aren’t sure. She has been pretty fun to live with lately, granted most of that is due to her teething, but it still makes me a little concerned. Hopefully she will do well with this transition.

One other thing that the neurologist recommended is that we go to an occupational therapist. He is hoping that the therapist will put her on a medication that will relax her muscles. As I already mentioned she is pretty stiff and rigid. This is due to her Cerebral Palsy – it is called spasticity & it means that she has increased tone in her muscles. Now that may sound good since we all want toned muscles, but for her it means that her body is too stiff. Her muscles do not have the stretch & flexibility that is needed for a lot of natural movements that we take for granted everyday. So he is hoping that a medication that will relax her muscles will help with her exercises. When we mentioned this medication to her speech therapist & physical therapist they were both very excited & said they have seen many kids make great improvements once they are on the proper meds. So we will see what happens. That appointment isn’t until June, though.

In the meantime, we will continue with our usual routine. Emily has speech therapy & physical therapy once a week now. And she sees the nutritionist once a month. She no longer sees the therapist from VIPS (Visually Impaired Preschool Services). We decided that we wanted to give the physical therapist more visits & we aren’t as concerned about her vision at this point. She will continue to have regular checkups with the ophthalmologist so we know that he will keep watch for anything odd. Her eyes are healthy & she has gotten much better about following objects (and people) or turning in the direction of a noise, so it isn’t a major concern for right now. She makes strides each week & we are so thankful. Mike has been a GREAT stay-at-home dad. He is very diligent about doing her exercises & finds new and creative ways to work them into her normal daily routine.

And as stressful as things have been around here, there have been many highlights. One of them is that Mike and I will be able to get out once a month. One of the ladies at our church knows how stubborn & thickheaded we can be & that we won’t ask for help, so she took it upon herself to organize an outing for us once a month. So a couple of ladies will come by to watch Emily for a few hours while Mike and I get some time to ourselves. I CANNOT tell you what a blessing this is! We are so thankful to have a church family that is willing to help us out (even when we are too stubborn to ask ). And another highlight is that for the past week Emily has slept through the night EVERY NIGHT. Wooo hoooo! This is very exciting! Plus she has been a lot better the past few days too. Maybe her teeth aren’t hurting her as much or maybe she has just gotten used to the new feeling. Either way we are thrilled to have our happy cheery girl back.

Well I think I have rambled on way too long. Since we have not sent updates in a while, I had to a lot to report. Sorry about that. I would say that we will send updates more often, but I won’t make any promises. We take each day as it comes. But I do hope that this email finds you doing well. And I hope spring is blooming in your neck of the woods. It is a wonderful reminder that God is the giver of life & He does it beautifully!

In HIS Strength,


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