Other things may change us... but we start and end with FAMILY

Thursday, January 14, 2010

Lily update....

I keep meaning to sit down and write an update on Lily but time just seems to keep getting away on me! I guess that is what happens when you have 3 kids under 4!!!

When Lily went for her 2yr checkup her Dr. noticed that she was still little ( not really a surprise!) and that she was slightly delayed in a number of areas so she sent us back to our Pediatrician to have that looked at!

We met with another new Pediatrician ( they are mostly locums up here so you never know who you are going to get!) but she had read through our file and I felt that she was up to speed on Lily! She spent about an hour with Lily, assessing her and asking me questions. She said she wanted to send Lily for a speech assessment, an occupational therapy assessment, a hearing test and also for some chromosome blood work.

About a month later we met with the speech therapist who did a number of tests on Lily and determined that her speech is at about a 12-15 mth range. She recommended that we be put on the waiting list for a speech therapist and that Lily would really benefit from that. We had known that Lily was picking up her speech very slowly and that it was really starting to frustrate her that she wasn't always able to communicate her needs. She puts alot of effort into making the words but most of them are unintelligable and I have a lot of trouble decifiring what she is saying. We felt great about that game plan!

We also met with an occupational therapist (OT is a therapy or treatment provided by an occupational therapist that helps individual development of physical skills that will aid in daily living. It focuses on sensory integration; balance and coordination of movement; and fine motor and self-help skills such as dressing, eating with a fork and spoon, etc.) and she had a number of tests that she put Lily through over 2 days. It involved a lot of playing, jumping, running and her overall ability to move/function normally. She determined that Lily was a very smart little girl who excelled in many areas of daily life, but seems to be delayed in other areas. She called it SENSORY PROCESSING DISORDER, which basically means that the way that Lily processes things using her senses isn't the same way that other kids her age do.
For example, some people can handle nails on a chalkboard.... and others can't... how they process it is different from each other.
The issue comes into play because Lily has super high thresholds for some things and super low for others. That is why we find it difficult to break her concentration when she is super absorbed in something, or why she HATES being spun around/thrown up high. She also struggles a bit in knowing where her body is in relation to things around her and her ability to do some normal everyday things such as climbing stairs/sitting down. The OT will work with her to teach her ways to process things in a way that will help her learn better, as well as help to teach her the proper way to do some everyday things. She has been to OT once already and so far loves it and her therapist!

We met with her whole team of therapists yesterday and it was great to all be in one room and to be able to ask questions with everyone there. They each have a 4-5 mth plan in place for Lily that plays off each other and what we already do at home and they all have high hopes for Lily. Lily will probably always have to be in some sort of therapy as she learns new things in each stage of life, but we are excited for her and the new things she will be learning.

One of the main questions we had is if she would ever have a "diagnosis" for what is "wrong" with her. Not that it would ever change anything for us and the therapists also mentioned that even if it was given a "name" their plans would not change. They look at the person, not the diagnosis. The Pediatrician ( who was in on the meeting) mentioned that they still have not received back the test results from the chromosome study or the blood work (she had done over thanksgiving in Edmonton) We are going to meet with her again in Feb. and then most likely they will put her on a waiting list to see a Geneticist in Edmonton. She wanted to make clear to us that we may never have an actual name/diagnosis for why Lily has these delays but that it was a good idea to see if we could determine anything that would be beneficial for us to know as Lily gets older.

As overwhelming as the last couple of months have been and I am sure the next couple of years will be.. we know that when God created Lily He made her how He wanted her and we rest in that.

We will do anything and everything we need to for her and of course Madi and Caleb. If you think of us in the next couple of months, say a little prayer as we get into a routine of 2 or more appts for Lily per week and also for the other 2 as we juggle childcare for them during the appts. We are so thankful for David's schedule which allows for a lot of times him being home for the appts and as well for our dear friends who are willing to help us with babysitting!

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