JuLee's CAT scan is back and it is BAD news....

Posted on Tuesday, July 1, 2008 at 03:21

I really need everyone's prayers....JuLee's CT scan came back and not only are the sutures closing (Metopic synostosis) but she also has Trigonocephaly....I don't know what all this means yet but they are referring us to Riley for eval by a nuerologist and surgery consult.

JuLee's Developmental Evaluation was today....

Posted on Tuesday, June 24, 2008 at 04:23

The good news first.....what she IS doing, she is doing very well.  Sher smiles, coos, recognizes mom (DUH!), uses great eye contact, cries to make needs known, and drinks well from a boottle. 

They are concerned that she does not roll at all to the right side....matter of fact she barely even turns her head in that direction....(I never noticed it), her soft spot on her head is very small (I told them we were having a CAT scan on Friday to have that checked out), she doesn't track that great, she still has her hands fisted...and her movements are very stiff. 

They couldn't say for sure but they hinted that she will qualify for therapy and again has encouraged us to apply for SSI for her. 

Even though she is 11 weeks adjusted today, they based the eval on 8 weeks so sound like she is pretty far behind and they gave me a sheet of things to work on with her.

We did put her back on breastmilk and are now fortifying with the Isomil  which seems to be

Prayer Request

Posted on Sunday, June 22, 2008 at 06:57

We have lots going on this week with JuLee but first I want to ask for prayers for a friend of mine....Amber had a little girl 4 days before I had JuLee.  She was 25 wks along and Abby weighed in at 1 lb 1 oz.  She came home from the hospital on Mother's Day.  Her husband just recently started a new job but was in a very bad accident last night and is now in the ICU with a skull fracture and also some bleeding they can't control at this point.  Amber is laid off.  Please keep this family in your prayers....they have had such a tough year and now she is dealing with a new crisis with her husband.

JuLee is having a developmental evaluation on Tuesday and then is going in on Friday for her CAT scan.  The worst part of the CAT scan is they have to sedate her, so please keep her in your prayers as well.

The good news is that she is now weighing 9 lb 1 oz....she is such a wonderful blessing.

Happy 5 month Birthday JuLee

Posted on Monday, June 16, 2008 at 11:19

I can't believe it has been 5 months since my little angel was born......what a big girl.

I'm 34 today!!!!!

Posted on Monday, June 16, 2008 at 09:00

Okay, I don't normally celebrate my birthday but I have been so blessed this year with wonderful friends and such a happy new baby girl I decided to celebrate this year......SO.....HAPPY BIRTHDAY TO ME!

Sewing by hand my first skirt

Posted on Friday, June 13, 2008 at 09:49

We bought a brand new sewing machine 3 months ago and I still haven''t go it out of the box.....but thought I would try my hand at freehand sewing.....I sewed this skirt completely by hand and also did the pattern by hand.  It needs a good ironing but other than that I think it worked out pretty well.....I am going to make her a matching covering to go with it.

Saved a birds life

Posted on Saturday, June 7, 2008 at 06:48

This morning when we got up we looked outside as usual and a poor robin was in our bird santcuary unable to fly.....at first we thought it's wing was broken but no, so we thought it was it's leg...well tonight we were going out to work on the garden and the poor bird was still there....my hubby saw that it had a string around it's little foot....so we performed emergency surgery and was able to free it and now it has flown away.

Just had to share.

Update on JuLee's sleep study and she's having a CAT scan...

Posted on Friday, June 6, 2008 at 02:10

Well on Monday she weighed 8 lb 3 oz and today she weighed 8 lb 10 oz so she has gained 7 oz in a matter of 4 days which is good because we thought she was going through a growth spurt.

She had her sleep study last week and although she passed the apnea part she failed the heart rate part so she is gong to stay on her monitor for at least another month.....I'm am so glad, I just sleep better knowing the monitor will alarm us if anoything goes wrong.....last Sunday, she had 6 heart rate drops so the Doc did say if she has anymore within 4 weeks she has to go back on caffine, that's the bad part.

Her developmental evaluation was postponed until June 27th, but we have to change that because she is having a CAT scan of her skull on that day.  Right in the middle of her head she has a "deep ridge" and the doc is concerned because her x-rays came back abnormal.  The bad part about that is that she will have to be sedated.

I think that's it......

Go To bed...No Way. It's only 2:00 a.m.

Posted on Monday, June 2, 2008 at 06:21

Here are 3 new pictures of JuLee.....I don't know how to put them in one post, so Idid it in 3 separate ones, just scroll down to see all three.

Smiling JuLee

Posted on Monday, June 2, 2008 at 06:19

Uh-Oh JuLee

Posted on Monday, June 2, 2008 at 06:17

Apparently Subway doesn't like homeschoolers.....Please help Boycott

Posted on Sunday, May 25, 2008 at 12:51

Subway is sponsoring a writing contest that specifically excludes homeschoolers....

"Contest is open only to legal US residents, over the age of 18 with children in either elementary, private or parochial schools that serve grades PreK-6. No home schools will be accepted."

I got this directly from the website....click on the link Subway to go to the site and learn more and to leave them a message that excluding homeschoolers is WRONG!!!!!!!!!!!!!!

Jules is sleeping 9 hours straight.....

Posted on Wednesday, May 21, 2008 at 09:34

Okay, as soon as the doc gave us the okay we started letting Jules sleep as long as she wants.....5 nights straight she has slept from 9:30 p.m. to 6:30 a.m.  At 9:00 we give her a bottle of formula (Isomil) then burp her.  After that I swaddle her (we use a contraption called a "Swaddle Me".  We got it for her baby shower and it is the only thing she will let us swaddle her in...)and give her her paci.....she is out until 6:30 a.m.  During the day she eats about every 2 - 2.5 hours but at night it is pure bliss.

Tomorrow is her developmental eval, so as soon as I get the info on that I will post.

On another note, I volunteered at a book fair today (it was really worth it, I got $120 worth of free books...) and when I got home JuLee got very excoted and starting cooing and smiling....it was so great....for the rest of the night all she wanted was me to hold her.....I think she missed me.

JuLee's 4 month check-up

Posted on Friday, May 16, 2008 at 10:05

was AWESOME......she is 7 lbs. 13 ozs.  She has gained exactly 6 pounds.  The doctor said we no longer have to fortify her breastmilk so now she is on straight breastlmilk and is occasionaly breastfed the "old fashioned" way.  Doc also said to give her the last feeding at 10-11 p.m. and let her sleep as long as she wants, she is allowed to go to just demand feedings now.  He does want me to put JuLee in her own room because she tends to grunt and groan a lot at night and he thinks it will help Dad and I sleep but I told him that was out of the question.  Another thing was to get rid of the binky......nope, not going to do that either.....

We have to schedule a sleep study for her to see if she is ready to come off the apnea monitor and she also had to have some x-rays of her head because she has a ridge int he middle of her skull.  The x-rays came back fine, he said it was just because she spent so much time on the sides of her head when she was born and eventually her hair would cover it up.

Update on everyone and everything......

Posted on Friday, May 9, 2008 at 09:08

We finished our school year at the end of March and are now starting a new year.  Our first day of the new school year will be May 12.  We switched over to Christian Light this year for everything so it will be much easier to keep all that straight.

The girls are all doing wonderfully.  They are loving JuLee more than I ever imagined.  JuLee is weighing in at 7 pounds 8 oz and is due to go in next Friday for her 4 month check-up.  She is smiling at us once in a while and sleeping well although she is as close to a colicky baby as we have ever had.  She usually starts fussing/crying around 5-6 in the evening and goes till about 9:00. 

I am taking a Yoga class with my youngest 2 nights a week and also taking a Water Aerobics class 2 times weekly.  I think that is about it.....

Cathy