And Four years pass by in a BLINK!

I never said that I was a wonderful blogger. LOL

I thought I'd swing by and post a "quick" update on Lillian.

Life is good! We have a 1st grader!  She started her 1st Day of "homeschool" yesterday.  In one of my last posts - I had talked about starting her in PMO at a local preschool. She remained there through last year - Kindergarten. She loved every minute and really excelled. She is reading, writing, and extremely intelligent. What a BLESSING she is to us and those who know her. :)

Medically - She see's her Neurosurgeon every 3 years now. The next appointment will be in December of 2016. She is thriving!

Long time coming......

Seriously, where does the time go? I can not believe that close to 5 months have flown by since my last blog post. :(

We had a very busy summer. Ken had some changes at work and while the changes meant more income, it also meant more time spent at work. Lillian is a VERY active "preschooler" now. We have been implementing many changes for her. We placed her in a "parents morning out" program two days a week during the summer. We did this to help the transition of starting preschool easier this past September. She has also recently started speech therapy (through our local public school system.. she is getting ready to age out of our early Intervention) program. So, she is in Preschool two days a week; speech the other two days, and we started a ballet class for 2/3 year olds this past week. The speech therapist said that she has an  receptive and expressive language delay and a articulation disorder. We are in the process of obtaining a FULL evaluation through the public schools... OT, PT and testing for special education preschool. Which, I thought we had already "tested" for preschool when they informed that she was "to intelligent"  (not complaining!) for the program. Her speech therapist said that there was nothing in her file about testing results for preschool.... hmmmm..... There will be a FULL work out now. They don't want to mess with "the momma!"  

As she gets older, we notice the differences between her and her peers more and more. Don't get me wrong... I would not change her for the WORLD! She is wonderfully and perfectly made. We adore her. :)

During her 1st dance class, she was a bit out of control.... She had a GREAT time but, would NOT listen to the teacher... ran and screeched the entire time. Five years ago, I would have looked at the parents of a child that behaved like her like they were "failing" some how. Oh how God has opened my eyes and given me so much understanding and compassion and taught me to NEVER EVER judge anyone!

Busy week... Speech IEP, OT evaluation and a diagnosis

We picked up Lillian's glasses last Saturday. The first couple of days were a little challenging but she has been doing much better. She will still take them off but, I simply clean them off and place them back on her face and usually don't even make a big deal about it. :D

This past Tuesday, we had an IEP meeting with her "home" school for the Speech Therapy that will start in September. I will have to drive her in twice a week for therapy. She was marked "to intelligent" for the Pre-school program through the Public schools. Oh, I'm not complaining that she is "too intelligent" but, what she is dealing with she could easily fall through the cracks... Well, if she had different parents. :D We'd NEVER allow that to occur. The meeting went well and we are looking forward to getting her started.

Today, Early Intervention returned for an OT consult. They mailed me a "sensory profile" a couple of weeks ago to fill out. They also recommended reading "The-Out-Of-Sync-Child." I was able to get a copy from our Library . Ken and I found it VERY insightful! We decided to order a copy of it along with "The out of sync child has fun" and "Raising a sensory smart child."

Back to the evaluation, we learned that Lillian has a Auditory Processing disorder (normal everyday sounds affect her. She cringes or acts fearful to normal noises while saying... I'm sorry, I'm sorry, I'm sorry.) She is classed in the "Over stimulation" category here. This is like there being "no filter" in noisy or busy places. We have always been watchful in how she responds to outside stimulus. She has ALWAYS "overstimulated." We do things in baby steps to help her adjust to situations. We have also been telling her (but not to wordy) what we are doing... ie: Our meeting at the school was at 7:20am. She typically wakes up around 7am. So, I knew that I would have to wake her up. In the past when I have gone in to wake her she has been a real "apple" (crab apple..lol) so, Monday night when I was putting her to bed, I simply said, "Mommy is going to wake you up tomorrow morning because we have to go bye-bye early." She did fabulous! I went in and she sat up and said "Momma wake me up." VERY smooth transition!

She has a Tactile Processing disorder. Under stimulation or sensory seeking. Tactile processing affects touch... so she will kick me when I am changing her, pull my hair, hit me, or she wants to kiss and hug and will ask to touch everything and everyone. While that is VERY sweet, other children are not overly perceptive to hugging a stranger... So, we are teaching her socially acceptable behaviors that will allow her to gain what she "craves." We are teaching her to give "five" to her peers... That way it's not perceived as "odd" behavior and she is able to gain the "touch" that she craves. We will be starting OT monthly. The OT that we met with today said that she was impressed that we have been so insightful to her and she is doing a very good job of getting what she needs and self regulation.

She is also "borderline" for a Visual Processing disorder.. we are going to watch this as she continues to wear her glasses and adjust to them.

Some children are overly sensitive, and others under sensitive and then there are the cases where they are a combination (which is the most difficult because no one knows how the child will be from one day to the next) She suffers from a combination.  We roll with it and allow her to "dictate" how and what we do for the day. Having said that.. that doesn't mean that she runs the house. It simply means that I follow her cues and adjust and alter when and where I need to. There have been times when  I have had to reschedule things b/c I knew that she would not be able to tolerate what we had planned.

Causes of SPD (sensory processing disorder) can be Inherited or Prenatal or Birth Complications have been implicated. We are so grateful that there is treatment and we are able to help Lillian. She will always have to live with this but her brain can be retrained to a degree  and she will be able to learn coping skills. 

"Spectacle's!"

We took Lillian to the Ophthalmologist this past Friday, and it turns out that she is far sighted and needs glasses. Her extreme caution when running, jumping, and maneuvering up and down stairs may be due to the fact that she is not seeing as she should! I'm not sure why I was a little surprised... you see, I have had to wear corrective lenses since I was three (3) years old. I too, am far sighted. Ironically, our prescriptions are just about identical. I have to be honest, I was a little saddened by hearing the news... not because I'm scared of how she is going to look or anything but because wearing "thick" (30 years ago) glasses was extremely difficult for me. I was the center for MANY jokes. Glasses paired with a unique name... most days were mere torture. I am so grateful that technology has made glasses lighter and thinner and that wearing glasses is highly fashionable these days.. Besides, only the most special children GET to wear glasses! :) Here is a photo of Lillian trying on her new frames. They will arrive next week.... Her Bear is also in desperate need for glasses soooo be on the look out for those photos!

  

Omigosh... I have been a terrible "blogger"

I have been wanting to get by here and write a post for awhile... but Life has been busy! On my last post I mentioned that Lillian is showing some delays in a few areas and we have confirmed sensory issues. That mean more assessments. We are so grateful to have early intervention and now the school system following her at such an early age so that we are able to accommodate and  assist her in all of her needs. It can be frustrating to though. She has only ever qualified for assessments and her evaluations. Don't get me wrong, this is FANTASTIC! But, we are learning of issues that if they are not "intervened" now then they will be delays later. So what do we do? Wait? Not this momma! I am trying to absorb as much information on motor planning and how to help Lillian. I am glad that I videoed her having that "tantrum" because, tantrums that extreme are not "normal." She was approved for speech therapy for the following school year. I am really praying that with the additional sensory processing issues going on that she will be able to attend public preschool. I want to badly to integrate her with other children but she over-stimulates and then when she is given an instruction; most of the time she is unable to follow through especially if she is uncomfortable and put on the spot... she will repeat the sentence back to you instead of answering the question. We will also be getting a OT evaluation through early intervention... she "may" qualify for monthly or bi-monthly visits. Which will be fine, I'd like for them to assist with  creating a "sensory diet" for her. One of my dear friends gave us a trampoline which will aide in helping her through some of her motor planning issues.

We were able to get her into see the optometrist before October...  We see him Friday. I am eager to see what he says. I have had to have corrective lenses (glasses) now contacts since I was 3 years old! I am very far-sighted... sometimes children out grow this and sometimes not.. like me. :) So, we have noticed her eyes turning in towards her nose on occasion and with my history... it's time to check. :)

We had a Beautiful Easter... Lillian looked adorable in her sweet little "chick" dress.

I have a lot to say...

Today, was Lillian's 2 year Early Intervention evaluation. (2 years being in the program) She will be 28 months old next week. I do not have a copy of her evaluation just yet, because the PT and speech therapists, and the case worker had to finish writing it all up so, I am grabbing it from my memory.

Lillian was assessed at 24 months for her Fine and Gross motor skills. (4 month delay... last year she was assessed at 12 months so she has maintained this amount of delay over the course of the year) We discussed a sensory processing issue and issues with motor planning. I can't say that I am surprised by either. We have known that she is an "intense" and active little girl and that she still tends to over stimulate. She is not 25% or more delayed so she will not qualify for services. They did suggest ways to help her become more aware of her body and her surroundings. They also recommended a book called "The out of sync child." I reserved a copy at our local library. They also recommended that we NOT get her involved in group sports (soccer or basketball) that more individual activities like dance and gymnastics will be better suited for her. She is very social with adults but tends to sit back and watch other children play. She watches what they do and how they respond. The therapists said that it may take her longer to learn a skill but once she has her mind set on it she will master it and be efficient at it. As I stated in my previous post, Lillian is going to be approved for the speech therapy program at the public schools in September. The speech pathologist has asked when she was due to follow up with EI and was waiting to hear back what they reported and has not recommended further assessments at this time. When speaking with her EI caseworker today, we did briefly discuss preschool and we agreed that at this time we do not think that it would be in her best interest to place her in a "mainstream"  class. It could lead to greater anxiety and frustration for her. However, I would really LOVE for her to be able enroll in the early preschool through the public schools. (same program as the speech therapy) Initially, she did not qualify however, her caseworker is going to discuss this with the speech pathologist. I am praying that Lillian will be able to have further testing and will eventually be able to attend. (Even though I have mixed emotions about her leaving me..lol) I am fearful that I alone will not be able to accommodate and supply her with all that will be needed to prepare her for kindergarten.

I am also trying to get her scheduled with a pediatric ophthalmologist. We have been noticing that her right eye is turning in. I called her pediatricians office today for the referral and when the nurse returned my call she said that the doctor was booked through October! Really!? She said that she explained Lillian's situation and past medical history and they are supposed to look over the cancellation list and see where they are able to fit us in.

On top of that, our only Children's hospital, the same facility that her pediatrician and Neurosurgeon are affiliated with are in a all out battle with Anthem (just so happens to be our health insurance provider) and they may end their "relationship" effective June 1st making all care "out of network." Sigh............ Praying that will be resolved!

We decided to bump up her CT scan and annual visit with her Neurosurgeon just in case they are moved into the out of network provider. Her appointment is scheduled for Monday...I am eager to see how everything looks in there. Our zero balance at the children's hospital was short lived!

And... I BROKE my toe this past Monday night. Yeah... I tried to rip it off with Lillian's high chair. Quite literally... I ended up going to the urgent care only b/c it was about 70 degrees sticking out away from my other toes and when I pushed it back in... it just bounced back to where it was! I wanted to have an xray and make sure that I didn't break it further down into my foot. But, I'm happy to report it's just the toe... but at a diagonal across the first joint! UGH... Needless to say, it's been an eventful week around here!

Looking at the broccoli and lettuce in the garden.

A...hem! *clears throat*

Where to begin? So much has happened in the last month... Let me begin with, Lillian had a labial adhesion, UTI, and an ear infection. We went through a 20 days worth of antibiotics, over a month of Estrogen cream. We  were also referred to a Urologist. He instructed us to continue the estrogen cream (safely) for the next month and ordered a renal and bladder ultra sound. We returned for a follow up last week; the adhesion has been resolved AND Lillian's Kidneys and Bladder and healthy and in perfect working order! :D We have been dealing with MANY tantrums. These have not been simple throw down on the ground tantrums, they have been very forceful and Ken and I been fearful that she is going to hurt herself. Thankfully we have been working around them while "picking our battles." An example; sitting in her car seat is not negotiable, nap or quiet time not negotiable and bedtime is not negotiable. At bedtime we "used" to read her a couple or several books while she sat on our lap in the rocker. This last month she has decided that she will sit on the floor beside the rocker for the first two books and then, I have to remind her that we are starting the last book and if she wants "rocky-rock" that she needs to sit on my lap. There are been several instances that she has refused and in turn has gone to bed with-out equaling a unhappy Lillian... (Mommy and Daddy too) She is learning the fine art of bedtime procrastination! :)

This past Wednesday we met with Dr. Bill, the gentleman that did Lillian's speech evaluation for the public school system. He did note a few reasons for concern, He said that she still has a lot of  "Echolalia" going on. Echolalia is where toddlers repeat back what is said. He went on to say that she should be starting to come out of it more than she is. He also noted that she is a bit wobbly. He said that he is going to recommend her for the speech therapy program this coming September with the public school system. I will take her once or twice a week for 30 minutes. He went onto say that he does not think that she will be in the program very long. He also asked when she follows up with Early Intervention. Ironically, they are coming out this coming Friday for her annual evaluation. The speech therapist that came out last year (and got her walking on her own) is coming again this time. He asked us to mention his concern of her unsteadiness. I am eager to hear what they have to say.

In the midst of all of this, I have been working part time from home from the corporation that I resigned from the Friday before Lillian was born, I interviewed for a full time in office position. My mom is in the position to be able to come to our home and watch Lillian while I return to work. Part of me is very excited about the thought of returning to work, the income, the income, the income... did I say the income? LOL Seriously, I loved my job, it was difficult for me to walk away. Then there was this part of me that is very sad about the thought of returning to work full time outside the home. It has been an amazing experience being home with Lillian for her "entire" life. We have really learned about our Faith. There have been many months where I have wondered if we were going to be able to make our bills. We are not extravagant people. We do not have credit card debt, NO car payments. My student loans have been paid off. I am SO thankful that we were able to get all of this in line before conceiving Lillian. Otherwise, I have no idea how we would have done it with those extra burdens. Back to the job.... I applied, made it to the 2nd interview and totally put it in Gods hands. I was unsure if now was the right time. So, I got that news last week as well... they selected another internal applicant. I'm totally "ok" with this. While the job was exciting and an additional income would be nice... there are definitely sacrifices. So, I am excited at the thought of being able to be home at least one more Summer with Lillian. Being able to "update" her nursery into a toddler room and most likely moving her into her older sisters room. (Tori will be 18 in June and will be gathering her bedroom furniture and etc) Sooooo..... thats pretty much our month.  

Confirmed...

Ear Infection. Sigh...... Praying for her speedy recovery. It's been a rough month. 

Cough..Cough...Cough...

Unbelievable, Lillian is sick again! :( She has not been well in almost a month. :( HUGE BUMMER.... I hate this for her! We are scheduled for an appointment on Friday to make sure her urine is clear.... I'm beginning to wonder if we will make it that long. :/ 

Preschool Evaluation, UTI, and a cold

Lillian has had a cold and a urinary tract infection. :( She was SO miserable! In the mist of it all, I realized just how easy I usually have it! She only objects to naps and bedtime when she is not feeling well. We did a lot... did I say A LOT of rocking last week! I took her to the Doctor the Thursday before, she was running a temperature and refused to eat. She has had a labial adhesion on and off since she was about a month or two old. :( While the doctor was looking her over I suggested a uti... Unbelievably, I was able to get her to pee in the cup! YAY Lillian... however this past week the potty training has come a screeching halt! She is so not interested, and will not go on the potty. :(  Anyway, initially the urine culture came back clear so when we left the office they had no real explanation except maybe a virus. The doctor said that the doctor on call would contact me on Saturday if anything "grew." Well, I received a phone call on Saturday with a positive test result. :( They phoned in antibiotics. It took another 3 days before she was feeling better. Now we are just working through a cold.

In our area Early Intervention begins to transition to the Preschool program in the public school system. To qualify, she would need to be 40% delayed in two areas or 50% in one area. When speaking to her EI caseworker I knew that Lillian would not qualify but I was assured that the school system looks at different areas and that we should attend the evaluation. We went this morning. She did very well and she does not qualify for the Preschool services they do want to do a speech evaluation on her in April. They are not concerned about the quantity of her words but the quality of her words. She is using 2 to 3 word phrases but they had difficulty understanding her out of context. We will see what they think in April. She also has her yearly evaluation with her EI caseworker in about 3 weeks. When we were talking about todays assessment she said that she is going to bring a speech therapist with her when she comes. (They same one that came out last year and got her walking on her own) I am eager to hear what she has to say or any recommendations that she may have for us.