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

10 Weeks and 9 pounds

This week has been a lot better for Natalie and I.  Natalie’s gas pain seems to be getting less and less.  I’ve been giving her a massage every night before bed and on bath days in the mornings too.  Quite a life of luxury to have two massages per day!  I haven’t slept on the couch in over a week and she’s been going at least 6 hours between feedings at night.  She still consistently has trouble at dinner time with waking up early from her nap but we’ve started letting her go back to sleep in the sling (if I can get her too) while I scarf down some dinner.  I’m starting to think she just wants to participate in the family meal instead of sleeping through it! :)

Yesterday we had some good news.  I returned the hospital pump to the lactation office at Presbyterian Matthews.  Since we were there anyway, I asked if they could weigh her for me.  She weighed 9 lbs 2 oz stark naked!  That means she gained a pound in 2 weeks.  That’s incredible.  The doctor guessed she’d be 9 lbs at 12 weeks if she continued along the same growth rate so looks like she’s exceeding expectations.  Slow growth and even failure to thrive (no growth) is common with Down’s children so this is a huge praise!

I’ve got all the Medicaid applications ready to mail.  We have one to send in for January 18-31st and one to send in for March 1st on that goes to a different department.  They told me that if insurance doesn’t cover the physical therapy visits over 30 then Medicaid would pick it up.  Her therapist seems to think we won’t have any trouble going with the 30 visit limit this year anyway.

Natalie has her hearing screen on Friday this week and starts physical therapy at home next week.  

Amy

P.S. The pictures are of the huge tutu I made for Natalie to match Julia’s birthday tutu.  Couldn’t get Julia to put hers on for a ‘twins’ picture, though.   Hopefully, she’ll consent someday!

Tummy Troubles

OK, Jill you asked for it.  This ended up being incredibly long and I thought I nothing to write about!  I missed my Tuesday entry because I opted to make Natalie a tutu instead.  Julia really wants to be ‘twins’ with Natalie so I’m trying to grant her request.  Hopefully, I’ll get some pictures of them together later today.

This week was doctor’s appointments for the older kids and none for Natalie!  Just check-ups for Zach and Julia.  They did great and we juggled Natalie’s feeding times pretty well too.  Zach’s got one more month on his thumb crib.  He’s not sucking his thumb anymore but chewing everything he can put in his mouth.  We decided to wait one more month just to be safe. 

Julia had her birthday checkup.  She didn’t have to get shots but had to have her finger pricked for blood to be drawn.  She’s become very anxious going to doctor visits because of her molescum bumps.  The finger prick was not easy but she got shiny silver band-aides so that made it all better.  She only had 6 more bumps to go and we are hoping the medicine we used last night will take them off.  We decided last night to celebrate today the ‘death of the bumps.’  Talking about the bumps ‘dying’ caused Zach to ask us about going to hell because he just wasn’t sure how to ‘ask Jesus into his heart.’  Wow!  We had a long discussion with both of them about how we all deserve punishment but that Jesus took the punishment for us.  Julia got very upset realizing she was always going to do things wrong.  We told her that was true but that God knew that and he sent Jesus to pay for anything we have or ever will do wrong.  When we believe Jesus came to save us, God sees us through Jesus.  We talked about asking for forgiveness when we know we’ve done wrong so we can be reconciled with God and then all prayed together.  The night ended with Zach saying maybe we should start doing family devotions.  Isn’t it amazing that God could use something like warts to start a deep theological discussion!

Natalie’s gas pain was very bad a few days ago.  She had one day of lots of inconsolable crying.  I was out doing errands with her and she started screaming.  I ended up pulling over to figure out what was wrong since it was so out of character for her.  I got her out of the car seat and she passed some gas then the crying stopped.  It happened several times that day.  Just before David came home that night, I started going through an infant massage book I’d gotten that afternoon using their gas pain relief techniques.  Natalie was practically hysterical before I started.  The first thing I tried was a pacifier.  They said the sucking releases endorphins and helps them handle the pain better.  It worked.  We also tried rubbing her back just above her bottom in a clockwise motion.  The book said it was a move to expel gas.  It worked!  I’ve been massaging her every day since then and she’s been much better.  Tuesday night she even went 7 hours between feedings.  I’m hoping to be able to take a class next month to learn more.

Had a scare with bills this week.  We got billed for the early intervention coordinator’s services.  The insurance company said it wasn’t medical so they couldn’t pay for it.  I asked the coordinator and she said it wasn’t supposed to be billed and she would check on it so hopefully that will work out.  The insurance company also said we are only allowed 30 physical therapy visits per year unless medically necessary.  Even if it’s medically necessary as in Natalie’s case, it is the insurance company’s option to pay for it or not.  Natalie will need A LOT more than 30 visits so we’d ask for prayer that it would be paid for.  We also received Medicaid for Natalie last week but only for the month of February.  They told me she could have it to cover the hospital bills.  When I called about it, social security said they awarded Medicaid starting the first full month after a person becomes disabled and that if we needed help before that, it would have to be through NC DSS.  DSS has a constant message saying they are too busy to take phone calls but they did have an e-mail address.  I’ve actually had good luck so far with getting responses over e-mail.  They are sending me an application for Medicaid through them.  So, we’d ask for prayer that we can hold off the bills that we are hoping Medicaid will pay for and that Medicaid will come through for January 18-31st.  I can see how all the money stuff could work out but right now it’s still unknown.  God has been gracious and reminded me not to worry about it again and again so we are just plugging ahead day by day.

Amy

8 weeks and 5 years

Natalie is 8 weeks old today and Julia is 5 years! Both had a pretty good day.  We were supposed to go to another hearing screen today for Natalie but Monday night was rough.  I think she had a slight fever from her shots at the pediatrician’s office.  I rescheduled the hearing screen for a few weeks from now.  Monday was exhausting and I didn’t want to run out of steam for Julia.  So, we slept in and then Natalie, Aunt Mandy and I went to Julia’s school for her birthday treat.  Julia seemed to have a great day.  She was wearing a new dress I made her (a super twirler, no less) and said she had a princess dress on.  We brought her doughnuts with pink icing AND sprinkles and she seemed pleased.  Once home, she got to open Aunt Mandy’s present and then called Nana to skype opening hers.  Julia and Zach played all afternoon with those two presents, forgetting to ask about TV so Mommy is grateful!  I even got a short nap in before dinner.

Monday was another busy day.  First, we saw the pediatrician for Natalie’s 2 month checkup.  She was 8 lbs 2 oz and 21 inches.  We’ll probably go back for a weight check at 3 months and then the next doctor appointment will be at 4 months.  The doctor expects her to be 9 lbs at 3 months and 10 lbs at 4 months if she continues at the same growth rate.  That’s a lot smaller than Zach and Julia but still good for her.

We left the pediatrician, grabbed me some lunch, and made it to the physical therapy evaluation early enough for me to pump a few minutes before.  Natalie got 3 shots at the pediatrician’s office and it didn’t hit me til we saw the physical therapist that the shots would make her irritable.  She cried a little but did ok.  The therapist said Natalie was on track for a one month old (her corrected age) but that her neck and core were a little weak.  She recommended that we start therapy so Natalie won’t fall behind.  We should have a physical therapist come to the house once a week soon.  The therapist that evaluated her also gave me several massage techniques for her stomach and some exercises we can start using to strengthen her neck and core.  Good news is some of the things she suggested I’ve already been doing.   I left the PT appointment and decided to stop to get David some contacts.  When I got back in the car, I couldn’t turn the key to start the ignition.  It’s been getting progressively worse but yesterday I tried 25+ times then called David.  We were just about to figure out how to get it towed to Honda when the ignition started.  I was afraid to turn it off again so Natalie and I sat in the car while David made phone calls to figure out how to get it fixed.  We went to Honda and met David came home for an hour or so then went back to pick it up.  Big chunk of change but can’t really get by without the car starting so it’ll have to work out.  David and I did get to do a short dinner date, though, since Mandy was home with the kids.

Amy