Thursday, January 27, 2011

Swallow Study & Playdate

Its been a busy few days ....
Saturday we all had a really fun playdate with my friend and her triplets, who were born the same week in the same hospital as mine. All the babies had a great time, and Skye is very good at playing with others. Henley is still a bully and likes to get a baby then lay ontop of them, and then go limp while they struggle underneath him. He also does this to Skye - who knows why he does this???? Maybe its a boy thing.... Anyway Skye really enjoyed it and was sharing toys really well, especially with Brayden - they were playing the drum with one drumstick each....very cute.

So after a full day, we bathed all the babies and went out to dinner, and that was a CHALLENGE. Everyone cried, everyone in the restaurant hated us (dagger looks) and a lady told my friend it was a crazy time for us to bring out babies when so many older people like to go out at this time (we went early).....what, like we aren't allowed out at all????? Next time we decided on getting take out  it was waaay too much hassle.

My only regret was I DIDNT TAKE PHOTOS.... next time I must do this as they are hilarious together.

So then on Tuesday we went for the swallow study with Skye. Normally we have had a 3 month wait for a swallow study in Orlando, but now they do them locally and we got in within a week!! Skye did great, I took her little snacks but she wouldnt eat them , but she did drink from a large spoon for the speech therapist and they did all 3 liquids (thin, nectar and pudding) and she was swallowing it all like a champ (couldnt believe it).

So the outcome was that she has no swallowing issues, and feeding should now be pushed. We discussed speech therapy and I told her my concerns. She told me my experience was not the norm, and if I wanted to try again with someone else we could start off with a one-off consult and from there I can pick and choose when/how often to have it, so I said ok to the consult.

Yesterday I sat her in the high chair and she ate lots of mashed potato with no problem!!! Of course I had to wrestle the first spoonful into her mouth while she was hitting me, but then she decided it was ok and wanted more...and more...and more!!! So a great start, but Im not going to get too cocky as when I re-start feeding her (which I do every month or so) she does great first 1-2 days then she refuses all food again, so we will see. This time I'm going to be more forceful...... Also Henley does not make it easy as he goes wild when he sees the high chair (which is why we stopped using it) he has to try and climb it. Yesterday he climbed up and pulled Skye's trach out while I was getting a spoon.....

Anyway, here are the lastest 2 pics!!!

Skye loves chocolate goldfish!!!!
Stunt man in training

Friday, January 21, 2011

GI doctor

Skye went to see the GI doctor this week. She goes every 3 months and he usually increases her feeds slightly and then thats it for another 3 months. This time he didnt increase her feeds as her weight (23lb) showed consistent growth so we remain on 900 cals a day of Pediasure (plus a few grains of rice and crumbs of toast). What he did want to do was re-instate speech therapy. I said NO.

Last year we had about 6 weeks of speech therapy which I will go out on a limb and say was a complete and utter joke/waste of money. I'm glad I wasnt paying for it personally or it wouldnt have gone on for 6 weeks. Here is my venting list of why we are not having speech 'therapy'

1. Therapist visits lots of kids in the area then comes to you, passing on anything they might have. The ONLY times Skye got sick last year was when she had speech therapy.

2. we spent more time doing sign language and playing than eating ???!!!!

3. When I said I didnt want it anymore they got nasty with loosely veiled threats along the lines that I'm putting my child at risk blah blah blah. I dont take kindly to that.

So her GI doc said he was concerned that we are not pushing her to eat. We were origonally waiting for her trach to come out (she took bottles no problem before the trach) but that never happened, so he wants us to start her eating. I explained that I can MAKE her eat and drink (syringe) and I have done it often but she doesnt like it and its not pretty.

So heres the deal we made. NO SPEECH. I agreed (begrudgingly) to a swallow study ,scheduled locally for Thursday to rule out any physical issues that may have been present/and/or developed, and if all is good on the study the plan is to get tough......

No photos for now, I do have some which I will try to add in the next few days....

Right now I'm going to get some sleep. The babies have a playdate with the Ray triplets tomorrow. They were also a set of quads born a week apart from our babies and they always enjoy playing together!!!!

Thursday, January 13, 2011

New Shoes

Even though we dont really go anywhere I always like the babies to have at least one pair of shoes that fit well, and I was shocked when trying to fit Henley into some shoes the other day that he had completely outgrown a pair of shoes that had never seen the light of day... So today we ran into Target and got 2 new pairs of shoes. I LOVE the babies wearing new shoes and clothes, because they really notice and check themselves out!!! So they are ....check out Skye's new shoes dance!!

Tuesday, January 4, 2011


Today the babies had their 18 month check up and did great. They both had 2 shots but thats it now till they are 2 years old, and then its only one shot, so good news for them on that score...

Here are their stats as of today....


Weight        22.5lb (20th percentile)
Height         30.5in (10th percentile) I think they stretched her but I'll take it...
Head circ   48cm (85th percentile)

Verdict - A tiny tot with a big brain

Very pleased as Skye has always stayed off the chart for so long, its good to see her in the curve!!


Weight      26lb (45th percentile)
Height       33in (55th percentile)
Head Circ 47 3/4 (50th percentile)

Verdict - Great going for someone born 1 lb 9oz and 12 inches long !!!!

The babies also had a special based tooth protector applied by the Pediatrician which I had never heard of before. She painted it on their teeth with a brush and its supposed to protect their teeth against cavities for upto 3 months. Lets hope it was worth all the screaming and upset we had to get it on!!!!

Everyone has had a bath and gone to bed early tonight with a dose of Tylenol which i always do after shots, so lets hope its a quiet night because I'm guessing they will be up early!!!!

Sunday, January 2, 2011

Christmas and New Year

I cant believe its been so long since I have updated on here.... The days have flown by over the holidays and the babies have had a great time. They didnt get the idea of unwrapping presents very well but they loved playing with their new toys. I spread them out over a few days so they got to play with everything, and I have spent some time bagging up their older toys ready for Goodwill so that they can see what they have.

Their big gift was a kitchen, which they love. Surprisingly Henley is the main chef... He can put food in the pot and he stirs it with the spatula. They both put food in the fridge, oven and microwave and will bring us food to 'eat' which as soon as we have pretended to eat it and give it back to them, they give it straight back at you to 'eat' again. I think I have faked eating the same plastic corn about 300 times at this point !!!!

We did take them to the little park in our community for the first time ever over the holidays, which was a big deal, as the babies do not normally leave the house. They loved it but Skye was so funny... she spent the whole time picking up mulch, grass and leaves and trying to eat them..... ironic as this is the girl with a feeding tube because she wont eat....

Oh, well, here is a selection of photos over the last few weeks. We have our (late) 18month old check up on Tuesday so I will update then !!

Their new favourite place


I braided her hair !!

Let me out!!!!

I help to wash my hair now

Also here is a short clip of Henley on the climbing frame