IFSP and snowdays

This blog is a little overdue.  I am a bit jealous of some other imom's that seem to find the time to blog a bit more often than I.  Not sure how they find the time - they must be superhuman superwoman supermoms.  I struggle to just get laundry done, dishes washed and kids bathed!  Someday I'll figure all this out.

Over Christmas break we had one day of snow.  Jed hasn't really been able to play in the snow, so this was his first opportunity to go outside and go sledding.  He was thrilled and kept saying, "I love playin in the 'no."  We went down the hill in the back yard over and over and he quickly realized that he would go a lot faster if I rode with him (I didn't tell him that it is because I weigh 5 times as much as he does!).

The snow only lasted a day - but it was sure fun while it was there!

 

 

If you look close int he pic above, you can see Julia photobombing.  And the wooden sign is a Christmas present from my hubby.  I've wanted one for ages so he found a place that makes them and drove 2 hours to get it and surprise me.  I love him.

 

Just an update on Jed.  I know I focus a ton on Julia -since her eye is why this blog started in the first place - but Jed is too awesome to leave out. 

 

He has started talking.  A lot.  Like never stops.  He comments on everything and his vocabulary amazes me.  He is potty trained (almost night trained too) and I am so proud of him.  I love when I ask him to do something and he says, "All right" in his little voice.  Every morning when we are leaving for daycare he makes me roll down the window so he can say good bye to Daddy. 

 

James says, "Bye Jed."

 

"Bye, Daddy."

 

"I love you Jed."

 

"I love you too Daddy."

 

Melts my heart every morning.

 

He is very polite.  Always says please and thank you and is quick to say, "Nice job, Mommy!" when I do anything remotely good.  He is starting to be more independent and wants to play in his room with his toys.  But he doesn't want to go alone - he wants Julia to play with him.  He really loves his little sister, he just sometimes hugs too hard. 

 

As for Julia, we just had her IFSP meeting.  These are the meetings we have every 6 months with First Steps (early intervention) to review her goals and services.  I got a little teary when we looked back at some of her goals.  I remember when her goals were to sit up on her own and to take a bottle faster.  Now she is working on being more confident in unfamiliar situations, scanning horizontally and vertically, using her peripheral vision and speech.

 

 

Right now she is doing great.  She will stop at a crack in the driveway because she can't tell if it is a step or just a crack.  But that is good!  At least she doesn't just step over everything - that could be dangerous since she doesn't have depth perception.  She is starting to try to use a fork and is completely off bottles.  She doesn't really do any pretend play, but she will dump out the buckets of play food and follow her brother around.  We are continuing vision services once a month and OT once a month.  We meet again in 6 months and will go over goals again and possible add in speech therapy.  She isn't really saying any words yet, but I'm not concerned yet.  She obviously understands things that we say to her, she just hasn't started talking.  The OT wants us to ditch the binky.  I'm not thrilled about it, but I understand her reasoning.  I told her we weren't going to attempt that until after surgery in a few weeks.

 

I found out that since she is in First Steps she qualifies for a 2 hour a week preschool program at United Services when she turns 18 months.  I'll need to find transportation there and back since it is during my work hours, but I am excited for her to be working with teachers and around other kids her age, even if it is only for a short time each week. 

 

 

I look at my little girl and realize that she is turning into a little person - she isn't a baby anymore.  That is a very sad thing, but also an awesome thing.  When I see all that she can do and remember all that she has overcome, I am very proud.

 

I'm nervous about her upcoming surgery.  I know it is necessary and I will be happy when her eyes are straight, but I am ready to have it over with.  I am just praying it will help with her head tilt too.  It has gotten more noticeable that she tilts her head to the left to see.

 

This is the "I didn't get my way" face.

 

 

So things are trucking along in our household.  I know she doesn't have her glasses on in these pics, but usually by evening, she is done with the glasses and won't wear them.  It happens every night when she starts to get tired.  I probably should force her to wear them, but I figure that after a long day of patching and wearing them, her eyes are probably tired.

 

So keep us in your prayers.  We see the doc for new measurements (of her eye turn) on Jan. 29 and then surgery in Feb. 5th.

 

And just for fun...

 

 





 







 

Functional vision assessment

Julia had her functional vision assessment yesterday.  It was done by a vision specialist from Delta Gamma Center for Vision Impairments.  This is a local non-profit that provides all kinds of awesome services for kids with vision impairments and blindness.  Delta Gamma works with First Steps, which is the early intervention agency for our state.  Julia has been receiving services from First Steps since she was 3 months old due to her vision issues.  Until now, she could not receive services from Delta Gamma because you have to have low vision in both eyes to qualify.  So she received OT from a therapist that specialized in low vision, but didn't work for Delta Gamma.  When we received the results of her acuity testing, her case manager from First Steps put a request into Delta Gamma.  Her doctor agreed that an assessment would be a good idea, and so that brings us to yesterday.

Lindsay came to our house and basically "played" with Julia for over an hour.  She did simple things like placing bright colored objects at different levels and in different places to see if she would scan the room vertically and horizontally.  She watched her try to put things into boxes and take them out.  She tried to get her to track objects.  She took objects from behind her and moved them around to the front to see when she would see them in her peripheral vision.

Overall, Julia did really well.  I do think her new glasses are really helping her see better.  Lindsay noticed that her eye still does turn when she is focusing on things and she did see the nystagmus.  Julia's head tilt hasn't gone away with the glasses either.  Lindsay's recommendation is that Julia be placed on "monitor" status, which means she won't receive direct services from a vision specialist, but will be assessed quarterly to make sure she is developing as she should.  Her concern was that as she grows, she may struggle with print, pictures and other smaller items that kids look at as they grow out of toddlerhood.

Her biggest concerns were that Julia can't see things when there isn't a contrast.  For example, when working with the big duplo blocks, if the base is green, she won't pull up any of the green blocks.  She can't see that they are there because of her lack of depth perception and her poor vision.  But she will pull up the yellow blocks.  She also was concerned about her vision on the right side.  She really didn't turn to look at anything when Lindsay brought it around her right side.  She encouraged me to try putting things on Julia's right to force her to look that direction, even if it means turning her body.  She doesn't want her to get into the habit of not looking to the right since she can't see well out of that eye.  But other than that, Lindsay feels she is behaving like an average one year old!  Hurray!

The other great information I got from Lindsay was a recommendation for a different optical shop that carries miraflex and offers really good deals (apparently they do buy one/get one free so you can have one pair of glasses and one pair of prescription sunglasses!).  We did not have a good experience with the optical shop that made her current glasses (why would you recommend wire frames to an infant is beyond me) but I didn't know what other shop would carry miraflex.  Apparently we aren't the first family she has worked with that has had problems with that shop and she too was perplexed at why they are so adamant that people not use miraflex frames.  So the next time we need new lenses or frames, we will be going to this new shop.

I will get a full write up from Delta Gamma of the assessment, and we will have to have another meeting to re-write her IFSP to include the monitor status (as a special ed teacher, I knew that we would end up with another meeting and more paperwork - I'm just glad I'm not the one writing it!).

So for now, Julia receives monthly visits from her occupational therapist.  She will have quarterly visits with Delta Gamma.  I have monthly visits with Missouri School for the Blind through a program called MOSpin, which is an educational program for parents of children with vision impairments.  And we also see Parents as Teachers a few times a year.  It sounds like a lot, but really, it isn't much.  And it is worth it to make sure that Julia gets all the help that she needs.

So for now we are waiting for her new miraflex glasses to come in and we see her eye doctor on Nov. 1st for a repeat acuity test (Cardiff acuity test) to see if the glasses are helping her vision.  We will also see if we are keeping the glasses for the right eye or going back to a contact and where we are going with patching.

More contact drama

Julia and I have really bad luck.  Well, at least when it comes to contacts.  If you read my last post, you saw that the contact company had screwed up AGAIN and sent an 8.6 when Julia needs a 6.8.   They assured the Eye Clinic that they were overnighting a new one and it would arrive on Monday.  No problem.  Doctor appointment is Wednesday.  We will pick it up while we are there, have it checked, voila - no problem. 

I get a call from the Eye Clinic this morning.  No contact.  They can't find it.  Can't get a tracking number because the company is in Colorado and an hour behind so they aren't open.  I started crying and told them I was coming to the appointment anyway because I had questions for the Doc.

It was an emotional appointment.  Dr. H was so very gentle and explained everything with grace and support.  I had my list of questions (again!) and he patiently answered them all, even when it was answers he knew I didn't want to hear.

So apparently an eye floating up is normal in aphakic kids.  The brain can't comprehend the dissonance between the images and to make it bearable the eye "floats."  Hopefully it will be corrected with the contact. We will look at surgery for the eye crossing and floating up if it is doing it more than 30% of the time with the contact in.  He explained that any kiddo with a prescription over +3 is going to have an eye cross when they don't have glasses or contacts.  So when you get into prescriptions like +19 (what Julia's is) there is going to be crossing!  Hopefully some extended time wearing her contact will help.

Julia's eye also "jumps" when she is patched and I thought it was her trying to focus.  Nope.  It is nystagmus - also common in aphakic kids.  He explained something about her eye not being "fixated" like yours or mine because she didn't have visual stimulation those first months.  I didn't quite understand - but did understand that this is just another part of the package. 

The head tilt is also part of the package.  She is trying to have things in her field of vision in her left eye so she can see them.

We went over the numbers from the EUA and everything looked good.  Her cornea is super, super steep (which I already knew) but he compared her number to a normal person and I was surprised.  Probably explains why a contact don't stay in (think of trying to keep a beanie hat on a pointy head versus a flat head).

He understood my concern with the difficulty we are having with contacts.  He agreed that her being in a lens 50% of the time is not acceptable.  He suggested we give this next contact a shot and if things aren't improving we will talk with the surgeon about implanting an IOL early.  There are risks of complications with IOL's, but the benefits of constant correction in her vision outweigh the risks at this point.  I am also going to invest in some backup contacts (a hefty investment) so that we can have several spares at home.  That way, if they keep falling out and getting lost, we have another one ready and don't have to wait weeks for a new one.  It isn't ideal, but it is what we need to do for now.

We also are increasing her patching time.  She will now patch half of her waking hours.  It is going to be a challenge, but it is so necessary for her to have good outcomes.

He carefully told me that he is not giving up - his job is to bring her vision into focus and keep it in focus and he was going to do that.  He also assured me that I was doing everything right - this was not anything I could control.  I really needed to hear that.  I was having a "mommy guilt" day and was feeling like I must be doing something wrong and I was failing my daughter.

We go back in 4 weeks.  The contact should arrive in the office tomorrow - so I am picking it up on Friday.  If it seems to stay in, I am going to call and order the spares.

In some good news - Julia had a hearing test and passed with flying colors.  I cracked up during the test because she was sitting on my lap and they would say her name through the speakers to get her to turn her head.  When she turned her head, these toys would light up and make noise.  She was exactly like Pavlov's dog and everytime she hear a sound, she whipped her head to the side to see the toys light up!  Hilarious!

No pics today - don't have the time or energy.  But definitely will put some up before I go back to work in a week and a half!  Ack!  The summer is almost gone...