The Twins-15 months

Its hard to believe that my babies are already fifteen months…They are at such a fun age..I'm lovin it..We finally got our kitchen child proof…it really needed to get done..my babies had way to much fun in the drawers.. and since there was two of them they got emptied pretty fast..and are really starting to interact and play with each other..there is def a difference in them…Jianna is the more outspoken/outgoing one..daddy’s girl..and Jayla is the quiet/laidback one..mommy’s girl..They are still pretty close in weight..Jayla is 23.8lbs, and 32.25” and Jianna is 23.4lbs. and 32.5”…
They are talking like crazy….some words are tnk u..for thank you…ba-ba..for there ba-bas that they only get at bedtime..mama..dada..binky binky..for there blankets that they are sooo attached too..nigh nigh..for night night..up..for cup,..nummy nummy.. to eat.....that’s just some of the common ones..trying to copy everything...Jianna walks around telling Jayla no,no,no… both walking like crazy..feeding themselves. .and causing PLENTY of mischief…as I'm typing this I found them in the bathroom..with Avery brushing there hair..and the babies  hair is wet and the toilet seat up…so you can only imagine where the water came from but Im not going to think about that:-) Jianna starting signing more too..she picked up on that one..
Here is a picture of them playing peek a boo through one of our glass doors.;.;they were just laughing away..it was so cute!!!

Avery

This Thursday is our first IEP meeting so I am asking begging for prayers of peace and understanding from you all..This is HUGE my first IEP meeting and I just need to feel peace that the Lord will get me through this with the best possible outcome for Avery...Im a nervous wreck and cant wait for it to be over!!! 
This month has been a very busy month when it comes to Avery..we had lots of dr. appointments/blood work/another sleep study/dentist. So I just wanted to update you all on everything…
Avery had another sleep study done at the beginning of the month to try to see if we can increase the pressure on her machine and see if that helps her sleep more and keeps her from being so crazy when she sleeps..when I say crazy I’m talking about her everywhere..she literally just rolls around in her room all night..who knows what end she will wake up on..she rarely stays in her bed..{don’t worry its just a mattress on the floor right now bc I don’t want her falling out of bed every night}  So we found out she can tolerate the cpap machine at a nine for now..so that is what we are going to increase it to…Im not going to even say that that was probably our last sleep study for awhile bc its probably not..Im sure we will have to go back again…by now I am so used to them watching me sleep I don’t even blink an eye..  We are also dealing with a new mask..but the company is being a pain..I am still waiting for a piece for the mask and its been over a month so I finally called the dr office again and she ordered it from another company and it should be here by Wednesday so I'm crossing my fingers bc it has been a pain bc the head gear has been to small so its kind of like Cinderella where the wicked step sisters try to fit there foot into the glass slipper..lol..IM trying to fit Avery’s head into the head gear and once when I get it on she don’t like to keep it on very long bc of course it hurts..we have kind of been going backwards and its frustrating..But on a postive note she actually went all night one night with her mask on and well she was a completely different child the next day..she had so much energy  I didn’t know what to do…but it was awesome to see!!!


Avery had her first check up at the dentist too..She did good in the waiting room..we don’t need to go into how horrible she was in the room..It was a pediatric dentist that see a lot of children with special needs so they are awesome though..she did end up kicking the nurse in the face..They had her hands and I guess didn’t realize how flexible she is when it comes to her legs..she can touch her shoulder with her foot but I think they will remember how flexible she is next time  Turns out she only has 19 teeth instead of the 20 teeth that most children have..but no biggy…she will probably get all of her permanent teeth in…I didn’t even know..You cant tell there is no space or gap..its on the front four bottom teeth..
Avery had her hearing rechecked…At first they thought her right ear wasn’t hearing the sound waves correctly so it gave me a little bit of a scare but then after doing the other ear and seeing how that one read, and doing the sound booth..which I am so amazed at how they can test children's ears..It really is amazing..they stick a little tiny thing in there ear and it reads the sound waves to see if the ear drum is working properly..and then you go into this sound booth and are surrounded by different speakers..and they make noises into the speakers and she is sitting in the middle of the room in a chair and then turns her head to whichever direction she hears the noise..they make quiet and loud noises..but anyways they decided that she can hear just fine and that both ears are working good..but one tube is falling out..but I usppose its probably about time she has had them in for almost two years {best thing I ever did..no ear infections since then} and the average time is 9-18months..
We then had a appointment with the ENT  to follow up with the sleep study and also to follow up with hearing..mostly everything was the same but he did say that we might have to go into and surgical remove the tubes bc inside her ears are sooo tiny that there might not be enough room to just let them naturally fall out…we will see and just keep an eye on it…
Avery also had a check up done at the regular dr and now weighs 35lbs..and he ordered her blood work..which was check her thyroid, complete blood panel {checking for leukemia}, and  to check for Celiac’s  Disease.  All of it came back normal except for the Celiac’s disease..she tested positive for that..So we will have to go to the GI dr and learn/get more info and maybe even do more testing…For those of you that don’t know what it is..It is basically where gluten eats the small intestine..so we will have to eliminate the Gluten from her diet..and over time if we caught it in time the small intestine will heal if it wasn’t damaged alot..so Im trying to search on the internet and find everything that has gluten in it and I will start to take it out of her diet..I was pretty upset..basically bc It just seems like we have to learn to deal with one thing and then her comes another thing that we have to learn to live with..but it could be worse right??? So if anyone has any good homemade bread recipes without gluten in them you can send them my way!!!!  or anything else for that matter..lol!!  I had brought it up to the dr to get her tested for it bc I kind of suspected it by the smell in her poo and also when she goes poo in the toliet it literally sticks to the toliet..it can also affect there sleeping and make them really sleepy/more tired.and there weight gain..make them not gain weight
She is still getting speech therapy at the school once a week..then she is getting in home occupational and speech therapy once  a week too. She is getting way more talkative and they are working writing and cutting in OT among other things..the hardest thing is keeping her on task..she kind of has her own mind and wants to do what she wants to do and has a hard time doing other things..
Well that pretty much sums up her for awhile hopefully..hoping next month is quieter!!!
She was trying ot twirl in her Easter dress!!! 

Avery LOVES bubbles..and I got her this big tub of bubbles and it was gone in a week..she was always outside blowing bubbles..

Happy Easter Everyone!!!

We had a great Easter!!!  We went to church then ate lunch at the church..and then spent most of the day over at Jared’s brothers house..Here are some pictures from the day…
Here are the girls in there dresses that I made for them!!!  {that might explain why I have been absent lately from my blog }  It was a lot of work but they all  loved them and it was worth it but next year Ill start earlier!!  We wont say what time I was up until the night before Easter sewing buttons on all of the dresses!!!

Jianna, Jayla


Jayla, Jianna

This only happens once a year and it is like pulling teeth just to get it..and the worst person of them all is Jared!!!!


Eating and relaxing on our beautiful day we had!!{it was in the 80’s}  Im not complaining at all..that’s why I live where I do!!!

All the cousins eating some supper…

and they are off to find some eggs….

Yeap they found out what was in them too soon and stopped to eat some candy:)


All the kids eating there candy


The last picture is from Brielle…she drew it and wrote it all by herself and taped some purple flowers to it...{I didn’t tell her what to put} It says in case you cant read it…fome: Jeuess…..Jesus didy on the cros to forgive arur sis. That is what Esta is all a abut. 

Happy Birthday Avery

Did everyone have a good April Fools this year….we sure did and we have a hole in the ceiling to prove it..super long story but  I did succeed to trick Jared and Destiny with the ole kitchen sprayer trick and I almost got myself on my own trick more then once…HA!!  Well then the girls were on a mission to try to trick us so they almost got Jared with toothpaste on the toilet seat…and they got me with toothpaste in the wipes container..I reached in to grab a wipe and pull my hand out bc it is covered in tooth paste..urgghhh!!!  We tried tricking them with there toothbrushes too but they caught on to that one too..and it kept going on like that for the night it was pretty fun..next year I think there will be some kind of food trick for them at supper…lol!!!  We then tried to get them with many verbal tricks like we are moving to SD and it is suppose to snow tomorrow but they really are to smart for there own good…
Wow my little “Dolly”- Avery turned four a couple of weeks ago…I really cant believe it..



Its been four years already since the dr walked into my room to tell me my little baby has down syndrome (still remember it like it was yesterday and probably will never forget it)..its been four years of some struggles/frustrations of raising a child with down syndrome…its been four years of lots of medical problems…its been four years of doctors and more doctors..its been four years of therapies..its been four years of major milestones that she has accomplished and we have celebrated each and every one!!!…its been four years of love that I cant even describe..its been four years of  pure JOY!!!….its been the most wonderful four years of my life and she has taught me and this family so much about love, life and joy that I would not trade for anything…We love you Avery…Happy Birthday Dolly!!!!
So if you all have been around you all know that Avery has been pretty picky when it comes to food/sweets..so I really have had to think outside of the box every year for her birthday..last year  I did a circus cake so she could have the sucker bc then she didn’t like ice cream, cool whip, cookies, cake, cupcakes, frosting..pretty much anything sweet…Well in a year we have improved a little bc she will eat certain cookies and ice cream but that’s about it..So I decided to make a giant chocolate chip cookie like they have in malls..at the Great American Cookie..so this is what I came up with…I couldn’t go all out on the frosting I had to make sure to leave some with out frosting so she would eat it…

Avery blowing out her candle and then clapping for herself bc she did it…

She is a little excited to open her presents..you cant really tell though can you????:)

This girl wants to ride a bike so bad with her sisters but she cant figure out how to pedal it and gets pretty frustrated and then gives up.…we have a little bike with training wheels from the other girls and that is the one that she tries to ride so I seen this “bike” and thought maybe she would be able to peddle it..well she couldn’t figure out how to peddle it but she made it work for her so she could ride bike with her sisters!!!  Love that smile on her face..I would say she is pretty happy to be riding her bike!!


Pure Joy!!!!

She got a baby from Grandma that moves her eyes and cry's real tears and will quiet down when you put a bottle in her mouth..She was pretty excited when she seen that baby!!!



Destiny and Avery looking at her picture book that Destiny made for her..Destiny found some of her pictures that she had that she knew Avery would like looking at with certain people in it…and put it in a little photo album that she had…examples: wedding picture of me and Jared, a picture of all the girls, a picture of me and Avery, and Jared and Avery and so on…..

The hat is from Brielle…she wanted to give Avery a present too so she went through her stuff and found something that she thought Avery would like and wrapped it up..These girls are so awesome with Avery I love it!! Makes my heart just melt and I'm really glad that God blessed us with all girls bc really is there anything better then having sisters…especially later in life!!! Sisters share a special bond…



It seems like just yesterday that Jared and I went to this down syndrome camp and we went to a parents meeting there, where everyone just kind of talked about problems they were facing and most of them were problems with schools and I remember Jared and I talking later saying We have plenty of time to worry about that right now we just have a little girl  so lets just enjoy that before we have to deal with all of that..…Guess what I have coming up in a couple of weeks..Avery’s first official IEP meeting and I'm a stress case!!  I have knots in my stomach bc I am so nervous. I cant sleep…I toss and turn bc I'm just dreaming about how all of this going to go..What's an IEP???? ..it’s a meeting with all the big dogs (like 10 of them to me and only me)
where we set out goals for Avery..”Any child who falls under the Special Education umbrella in the school system has an IEP which means that their education in school should be tailored just to them and to them only.” Here is a blog that I follow where she kind of explains IEPS…go here..as you will see that’s where I found the comics..
They wanted to put Avery in school last year but they wanted to put her in a DD (development delayed classroom) with four other kids that were barely verbal and I said no way bc I am actually trying to get her to talk more not less so I don’t see where that was going to benefit her bc she gets all the socialization she needs right now from her cousins (there are a lot down here) and as far as working on preschool things well I can work with her on that at home still..Well now another year has gone by and here we are..I really don’t want to put her in that DD classroom again which I have a feeling they are going to push it bc it where you go when you are in k4 I guess with development delays..the school isnt even our home school…She would probably be with the same kids who are non verbal..so we are going to try to push for a regular k4classroom..
I am going to let Avery lead her own pathway and she is going to let me know what she can handle and what she cant. and I'm surely not going to let them tell me where to place my daughter when they don't even know her!!!!! Am I in for a battle?????

Well we will see in a couple of weeks…right now you can find me buried in a pile of papers..learning everything..and boy oh boy is there a lot of information to learn…like federal laws that were written to protect Avery..and all these letters for these laws that you have to keep straight…like LRE and IDEA and that is only the beginning..I have to be honest I started to sit down with the SC handbook for special education in front of me and  my laptop had IDEA law in front of me and as I start reading..I just loose it..cant control it…just bawling like a baby…I'm just thinking this is soo much crap yes crap… to learn and I cant do this. I'm not smart enough to keep all of this straight.. How am I going to learn all of this??  I am going to let Avery down…just feeling very overwhelmed/frustrated….but I HAVE to do this bc I am Avery’s only voice and I am her only advocate..she NEEDS me to do this for her!!!  It is just sad that parents are put through the ringer like this bc we shouldn’t have to fight for the best education for our children ( not that I'm saying that I have to fight yet..but just guessing we will have to from others do)  so I am asking begging for prayers of peace and understanding from you all..This is HUGE my first IEP meeting and I just need to feel peace that the Lord will get me through this with the best possible outcome for Avery.