Days blur together

I just want to give everyone a real quick update.  Natalie is doing well.  She had her 4 month check up where she weighed 10lbs 1oz and was 24 inches long.  She has fallen a little behind on her growth, but the good news is she's still growing.   She had a bad reaction to her immunizations.  She had a fever and was too tired to eat by the bottle.  The last 24 hours have been tube feedings, holding, rocking, and all of the other things that come with a sick baby.  However this is the first time that Natalie has been to tired to eat but still able to cry when she was hungry or not happy.

My main reason for this post is to ask for some specific prayer.  Lyle and I are tired.  Our goal for Natalie functioning as a normal child 3-5 years from now is feeling really far off.  Patience is running thin for each other and Isaiah.  We're struggling with shifting blame to each other for what is and isn't getting done as well as who is getting the least amount of sleep.  haha  I suppose it's really comical when you think about it but in the moment it is simply miserable.

Thankfully this next week is Lyle's fall break at school.  He will only have to work his night job.  We really want to be able to take this time and give each other the breaks we need as well as spend some quality time as a family.  When I say we're tired, yes I mean physically but also emotionally.  Pray that we will feel that we are getting more sleep than we are and that we will use our time together in the best way possible for all 4 of us.  We would like to feel somewhat normal again.  lol "good luck"  i know.

Almost 4 months

I finally have a few updates for everyone.  This past month has mainly been a stand still as far as finding out anything more on what's going on with Natalie.  However, there have been many changes in our weekly routine.

Since the last time we chatted Natalie has gained her own PT (physical therapist), OT (occupatinal therapist), and DT (developmental therapist).  Each of these come out to our house once a week.  The PT focuses on Natalie's overall muscle and joint movement to help her with major development milestones such as lifting her head, rolling over, and eventually pulling up onto her feet.  The OT focuses on her fine motor skills such as tracking movement with her eyes and picking up/ reaching for objects.  The DT puts all of it together and helps us integrate all of these things in our daily life.  There is also a possibility she will start using a ST (speech therapist) in he next month or so, which brings us to our most exciting change.  Natalie was able to eat using her bottle only for 15 days in a row.  She would take 80-120ml, between 3-4oz.  Since that time we have increased how much she eats therefore she is back to using her tube for the last part of her feeds.  She hasn't gained weight in about a month but has grown almost 2 inches.  We're hoping the increase in her feeds will help her gain the weight needed.

There has been a delay in allowing Natalie to move on to a heavier flow bottle because her swallow study did not go well.  The circumstances they had her under where stressful and she did not want to eat for them.    However, we also did a lung x-ray and there was no fluid in her lungs; therefore, proving that she is not aspirating more than what her lungs can absorb.  I have a meeting with her ST on Tuesday to discuss the conflicting results of the 2 tests.

We have a new lab that will be sent off to the Mayo clinic to test Natalie for a DNA test of the RAPSN gene.  I haven't been able to find much information on it because it's such a rare test.

In mid-December she will have a CT scan done of her brain to make sure her scull is not closing prematurely.
If we still do not have any answers come December UNC will also perform the EMG/ NCS.  Both of these tests are nerving simply because they have to sedate Natalie.  Sedation is riskier for a baby with low muscle tone.

He ability to move is gradually getting stronger but we haven't hit any new milestones.  Her therapists believes that her low muscle tone is the only thing slower her down.  The way she reacts with her eyes puts her on target for her age.  Her movements are right at a solid 1 month old.

It's been fun to see her personality really starting to come out in the past couple of weeks.  She's trying to talk to us a lot more, and has figured out that a loud cry gets my immediate response.  Her voice is getting a lot stronger and she's taking full advantage of it.