To the Doctor’s Office again We Go

I feel like we are always at the doctor!  Natalie went in on Saturday because her eyes had so much goop, they were sealed shut.  Zach had just finished antibiotics for an ear infection and Julia was 5 days behind him on antibiotics for an eye infection.  Today we were back at the doctor because Julia has had a fever for several days.  Motrin knocked it out so she seemed normal but then at the end of the day she’d be voluntarily taking naps and the fever would be back.  We went to the doctor Monday afternoon and she has strep throat.  Zach had some similar symptoms on Saturday and Sunday but no fever.  He tested for strep throat too.  Neither one of them has had a sore throat, just a headache and slight stomach ache.  I asked and the doctor said it was almost impossible for a baby to get strep throat so maybe Natalie will make it through at least for this round.  Still no poop coming through but she’s been happy.  The picture above his what she looks like while we are eating dinner and she is waiting for hers.

We had the speech teacher and teacher for the deaf come on Monday to evaluate Natalie.  The speech teacher thinks that Natalie’s challenges with learning to talk will mostly be from the Down’s syndrome and that the hearing loss won’t hinder her much.  Since she does have mild hearing loss, though, they will start working with her now.  Cool how God works, huh?  Early Intervention wasn’t going to start speech yet just because she’s eating fine.  Miss Margaret (speech teacher) is talking about me working with Natalie daily on specific sounds right now, though.  In the evaluation, Natalie was on track for her age in the sounds and responses she’s making.  Natalie even had a few things she was doing ahead of her age group.  The speech teacher said Natalie was very bright.  Julia was home while they were here so I talked to her a little bit yesterday about how we need to read to Natalie and talk to her to help her learn to talk.  I caught Julia describing to Natalie in detail all the toys in Natalie’s gym today.  I called Julia aside and told her what a good big sister she was by doing that.  I then decided to tell her about the Down’s Syndrome.  I had talked to Zach about it previously and his response was pretty much, ‘great, now what’s for dinner.’  I talked to both of them about it more Monday.  Julia got a little sad and looked worried.  I told them both of all the great progress Natalie’s made, how healthy Natalie is compared to things the doctors have told us could go wrong and how lucky Natalie is that she has them as an older brother and sister.  They are going to teach her so much!  I told them it was why I was crying so much when she was first born but now I know that Down’s Syndrome is not as bad as I thought.  I mentioned how important reading was for her and Zach said, “we’d better get back on it then.”  It’s been awhile since David has read a chapter book.  Instead, he’s been reading smaller books each night and sometimes feeds Natalie while he does it.  Now, we’ll have the kids asking to read to help Natalie out too.

Got a call from DSS yesterday.  They said they were submitting my application that they had previously thought was a duplicate for January’s bills.  I found out that social security is examined for the date you call about it.  Since I didn’t get around to calling until February, that is why we can’t get it for January.  Still have hope that the state will approve us for a retroactive decision, though.

Experimenting with a video link on this blog.  Hope it works so let me know!

Amy

Medicaid and Stomach trouble

Ok, so Medicaid is NOT solved yet.  I called to give the hospital Natalie’s Medicaid number today and they said she was coming through as ineligible for the dates of service.  So, Social Security still maintains she is eligible for SSI from 1/11/11 to 2/11/11 and, therefore, eligible for Medicaid while she receives Supplemental Social Security.  Social Security says they do not administer Medicaid so they can’t tell me why it is coming across as ineligible so I should call social services.  After I got all this, I called up one of our DSS case workers and was sobbing by the time I got her on the phone.  Why is this so confusing?  She felt very sorry for me, I think.  It looks like the retroactive Medicaid application was perceived to be a duplicate application.  I was supposed to have it turned in by 5/4 so of course now it’s after that.  The case worker said she had a record of receiving our duplicate application on 4/19 so hopefully she could get the right people to accept it.  The particular case worker doesn’t know the rules about retroactive decisions so she couldn’t tell me what the answer would be but at least was trying to help me find the answer.

All that to say, I’m VERY confused about government programs right now and VERY discouraged that it might not come through.  The case worker told me she’d try to have an answer by the end of day tomorrow.  Please pray that Natalie would be eligible for Medicaid for 1/18 to 2/1.

Also, Natalie has not been pooping as much as usual- something like 3 to 4 times this week.  She’s seemed ok and still her happy self.  Right when I hung up with DSS, she woke up screaming in pain.  I’ve never seen her so hysterical.  I couldn’t call her down.  Her stomach felt hard, she screamed when I touched her scar, she screamed when I bent her legs to get gas out.  I finally decided to try and feed her and it helped a little til she fell asleep.  I called the pediatrician and they suggested a hot bath to try and see if it was blocked gas.  I’ve done that and some massage to expel gas.  She’s called down and happy again but it does make me nervous that her stomach is getting blocked.  Can’t believe I’m saying this but please pray that should would start pooping again.

Amy

Plugging along

Ok, I skipped the post last week but, in my defense, what little time I have to write a blog was taken up in searching for Julia’s white fluffy.  It was magically found by Zach a few days after it was lost but only after I’d wasted several hours cleaning things out to find where it had been hidden.

So, why so busy around here?  I can’t honestly say except adding work into the number of balls to juggle has made things a little harder.  I do feel like it’s easier to fit work in now than when I was pregnant with Natalie so things are getting better.  Natalie has been sleeping through the night for almost two weeks now so any day now I’m hoping to feel less tired.

Natalie has really developed a personality in the last few weeks.  She smiles A LOT and loves looking at faces.  She has her brother’s love for ceiling fans.  Today, I put her on the bed under our bedroom ceiling fan so I could get ready for the day.  She was almost laughing at it.  Several people have predicted that she would be a tomboy because Julia is so girly.  Could this be the first sign that the prediction will come true?  Kindof funny.  Zach and now Natalie both have seemed about to explode with excitement over the fan spinning but Julia could have cared less. 

Natalie saw the lactation consultant last week.  She was10 lbs 4 oz at her 14 week birthday.  She’s probably gaining about 4 oz per week which is a little lower than I’d hoped but still good.  Natalie currently takes 120 ml from the bottle and she was able to take 100 from me within the 30 minute time limit!  So, I am trying to nurse again.  I have been able to nurse her a few times a day and NOT PUMP AFTERWARDS!  Amazing!  The first time I nursed several times in one day, though, she woke up in the middle of the night.  The lactation consultant had told me that Natalie might need to eat more frequently if I fed her from me more.  Feels like a tough decision- do I go back to less sleep and hurt less or sleep and feel not so good from pumping all the time.  The pain is not unbearable but I can not wait to stop pumping when the year is up!

We met with Early intervention for the Deaf and Hard of Hearing on Monday.  I wasn’t quite sure what to expect but looks like they could be pretty helpful.  A teacher for the deaf came and a speech therapist.  They said they would teach me ways to speak and sing to her to help her learn to talk.  Natalie has a mild hearing loss in the higher frequencies which could mean she will have trouble hearing some consonants like f, s, th.  The speech therapist agreed that a hearing aide was not necessary for Natalie with such a mild loss but she did think monitoring fluid in her ears was important so more temporary hearing loss from the fluid didn’t delay her speech.  She also saw her PT last week.  Debbie was really encouraged by how much Natalie’s improved with tracking and watching faces.  Debbie thought her neck strength was much better too.  We see Debbie every other week and she thought that Natalie would probably have her head well under control by the next visit.  Her baptism is scheduled for 5/15 so I’m hoping she’ll have her head under control enough that she won’t flop out of the pastor’s arms.

Didn’t get very far on the wall project.  Here’s last weeks picture.  I was almost to the point of putting the dirt back but we decided it would be helpful to even the ground out a little but maybe not make it completely flat.  Zach is having a birthday party in a few weeks and I was determined to at least get the mulch down before the boys come over but looks like that won’t happen.  We now have a pick axe from David’s dad to try and break up the rocky clay/shale that is our soil.  I told David he looked like he was working on a chain gang when he was swinging the axe the other night.  He muttered something clever about how hard his wife makes him work but I’m choosing to ignore that one!  :)

Our new backyard adventure.  David screwed the old slide to the deck rail and voila- we have a water slide into the plastic pool!

That’s all for now- off to bed to start the race again tomorrow!

Amy

Spring Break Project

Ok, it’s spring break so naturally, I decided to bite off more than I can chew and grade the backyard with a shovel and the labor of two young children.  A neighborhood child taunted Zach and Julia last week with ‘your backyard is boring’.  So, I’m ashamed to say, that it lit a fire under me to defend my children’s worth in the eyes of the other 6 and 7 year olds on our street.  When our house was built 15+ years ago, the builder decided against hauling all the trees they cut down away and instead buried them in our backyard.  So, we have this huge hill that is death to all blades of grass.  That, with the fact that we were otherwise occupied when seeding was optimal means our backyard looks like tumbleweeds should be blowing down the barren wasteland and a shoot out between cowboys will occur at any moment.

So, I came up with the idea of building a small retaining wall into the hill and leveling the ground out a little bit so hopefully a new swing set can be put up and eventually a shed be built both on flat land.  Problem is, I’m cheap and don’t want to rent a CAT to grade the area so the kids and I started digging on Monday.  Strangely, they are enjoying the work.  I feel like we are getting nowhere fast especially since I can only work about 1 1/2 hour a day and still fit in everything else.  Hopefully, at the end of the week we’ll have a trench dug that still will not impress the neighborhood kids but at least it’s a start.  Also, if anyone out there has a playset in good shape that they want to get rid of, let us know.  Seems like that keeps getting put on hold more and more. 

Yes, we put our kiddie pool up (actually, it’s been up for a few weeks). And, yes, I put Natalie’s feet in it.  She actually did seem to enjoy it but we made sure she didn’t get too wet because it is cold water.  Zach and Julia have been in the pool a lot lately making up stories for all their Playmobil people in boats.  For some reason, today’s story involved all the pop beads in the house.  I woke up to the sound of the screen porch door slamming, little feet running across the deck and then voices discussing whether the beads sunk or floated.  Ahhh, the things that kids can entertain themselves with!

Also, Natalie is smiling A LOT.  What a huge blessing!  Awful how much I depend on even the smallest person’s opinion of me.  :)

Amy

Back to Work

Someone thinks her new dress is pretty funny!

I started back to work on Monday just 10-15 hours but it’s a start.  So far so good but having a little trouble fitting everything in.  Natalie is very close to sleeping all night but not quite there yet.  Some nights she goes 6 hours some nights she sleeps 8.  She’s 12 weeks today but only 8 weeks if you count from her due date.  Zach and Julia both slept 8 hours consistently at 9 weeks so I’m hoping she’ll be able to do it any day now.  Been having to finish work at night when I need to take a nap to catch up during the day.

Natalie had her first physical therapy session last Thursday.  Debbie will come once a week unless we decide every other week works out ok with Natalie being so young.  We talked about things Natalie is currently doing and Debbie left me with 4 tasks to work on this week.  We need to try getting her to lie on her side, look left as much as possible (she favors her right), practice touching her hands to her toes so she’s aware of her feet being there and tummy time.  Natalie did great with Debbie.  Not sure I have been putting enough ‘play’ time in with Natalie this week but we keep trying.  At least I’ve gotten consistent with massaging her every night before bed so she’s getting something of a routine there.

Today we saw an ENT to check on her left ear hearing loss.  The audiologist had told us it was conductive hearing loss but possibly sensory neural as well.  Dr. Silver explained to me today that conductive is in the ear canal up to the bones and sensory neural pertains to nerve damage that can not be repaired.  He said that Natalie’s hearing loss is very mild and still seems like it’s unclear as to how much.  If she had complete hearing loss in one ear, she would only have a 6% overall hearing loss.  Since the last hearing test showed that she was not hearing the higher ranges only, he said that she could be hearing about 95% out of that ear.  He checked her ears today and she does have some fluid in one of them.  He had more equipment to be able to see inside her ears so he said it was possible that during the test we did with the audiologist, she had fluid or that even the probe wasn’t’ able to get completely inside her ear to get an accurate test.  Since she is so young, the hearing loss is very mild, and her ears are very small (another attribute of Down’s syndrome), he suggested we just keep checking her instead of fitting her with a hearing aide now.  We will come back in 6 weeks to see him.

Just had to post this picture.  Julia consented to letting David take her picture- a major accomplishment!  Since we haven’t gotten a birthday portrait yet, I was thrilled that she seemed to enjoy her photo session.  She’s really becoming a Daddy’s girl since Natalie has arrived.

Time to feed the baby so signing off.

Amy

Nana Visits

My mom LOVES babies and Natalie has been no exception.  I can’t describe how with Natalie I’ve coveted friendly comments about her so much more.  One of the first things that got me on a crying rampage in the beginning was wondering if anyone but David and I were ever going to love her.  It’s been wonderful have my sweet mother here this week loving my baby.  Nana has practically fed Natalie every bottle since she’s been here and I’ve often caught her with Natalie sleeping on her lap saying “I could just hold her forever.”  Natalie has been rewarding with Nana with just starting to smile.  I got a bad cold Sunday evening so Mom ended up staying a few extra days to help.  I’ve been scared to touch Natalie for fear she’d get sick and end up back in the hospital.  I think I’m finally starting to feel better so Mom’s all set to leave tomorrow.  So far, Natalie’s just snorting as usual but please pray for her to stay healthy. 

Our 10th anniversary was last week so Nana and Aunt Jill let David and I spend the night out.  We went out to a nice dinner and then stayed at the hotel we had our reception at in Southpark.  We were gone for about 18 hours!!!!  It was a great break and wonderful to just be by ourselves for a short time.  Thank you SO MUCH Nana and Aunt Jill.

I finally got Natalie’s dress done to match Julia’s.  We took quick pictures before going to small group (yes, another contributor to us being so late).  Zach really wanted to get in and we had to convince Julia it would be ok even though he didn’t match.

Amy

Hearing Screen No. 3

We just got back from Natalie’s 3rd hearing screen.  Her right ear was again confirmed to be fine.  The left ear has mild hearing loss in the higher pitch ranges. 

Our next step is to see an ENT to see if there is anything they can do.  The audiologist wasn’t sure what the ENT would do but told me it’s possible they would do an MRI on Natalie to look at the ear structure better.  Natalie would need to be sedated to have an MRI so she might need to wait to be older.  It’s also possible they could do surgery to correct a problem.  If the ENT can do nothing for her or if she needs to wait to have and MRI, Natalie will be getting a hearing aid.  The audiologist said her main concern at this age was Natalie missing out on the brain’s development of language that she hears and learns from those around her talking.  Right now, Natalie’s probably hearing a good deal of our speech since we carry her around in our arms close to our mouths as we speak.  When she becomes mobile and is crawling on the floor, she won’t be able to hear us talk as well.

So, we’d ask for continued prayer for her hearing and that the ENT or the hearing aids would help.  Also, for prayer that our sweet girl will be able to talk without difficulty someday.

Amy