The perfect gift?

I have found myself in a bit of a gift buying conundrum. I consider myself to be a thoughtful gift buyer. I am not one to take the simple gift card "out" or just buy something to buy something. I pay close attention around birthdays and holidays to what people hint they might want/need. I find myself with y biggest gift giving stump to date.

When the girls turn 3 next month we will be ending services with Early Intervention. Over the past couple years we have had some amazing people work with our daughters. For two in particular I feel like I really need to show them how much they have meant to our family. What do you buy for a person (or people) who have been a therapist for your children, a huge support for you and an extended member of your family. My children truly love these therapists. To go buy a gift card or therapy tools would be a huge understatement of how we feel. I am stumped with a capital S.

Anyone have any ideas???

Numbers

One of the things I hate most about having the girls formally evaluated is the excruciating experience of reading through the reports on the assessors findings. You have to keep in mind that the goal of these evaluations is to look for things that are wrong but it doesn't soften the blow of reading page after page about what your child can't do.

As the evaluations themselves begin to wind down (only one more to go) the reports start rolling in. Some findings are wonderful. The fears of Grace having a learning disability seem to be gone. Abby can answer questions well above the 4 and a half year old level. They are both incredibly smart. That makes me so happy I feel like I could float. But then there is the other side. Gracie's expressive language is way, way below age level (and even though this is the case she still isn't qualifying for speech). Abby's locomotive skills are around 19 months. Grace has a lisp. Abby's postural skills are more than a year behind where they should be.

Reading all of this pains me. Most days we focus on our task at hand and we do out OT, PT and ST like we are told. We do what we have to do knowing that we are gaining ground. We are closing the gaps. But then you find yourself staring down at a report that outlines every little place where the gaps are not getting smaller and even widening. It throws you off your path a little. It makes you start to ask those useless questions like why? when? WHAT?

So needless to say I am anxious for this part of our preschool journey to be over. I am ready to do the IEP meetings, know what is going to happen and prepare for what is to come. Just one more evaluation to go...

Charting a new course

It seems like the biggest challenge some days in the midst of so many therapies is getting caught in therapy ruts. Doing the same old thing day after day bores the girls and me. I got a brief moment of inspiration the other day to try to change things up and get some new tactics. I also got some help from the people on my RS forum (about Abby's diagnosis). Here is what I have come up with:

- Using a weighted blanket to try to get Abby to sleep through the night... or at least for longer than 2 hour increments. The kid is freaking exhausting.

- A gait trainer. Not sure if we need one but brainstorming is supposed to be about not shooting down ideas.

- Swing Therapy. Using doorway swings helps kids like Abby find their center of gravity. Might be fun too. :D

- Visual Therapy. Not sure how this would go but I will talk to the eye doc in a couple weeks. It would help with her depth perception issues.

- Equestrian Therapy. Could be pricey but I will look into it. As a former equestrian myself I like this idea.

- Water Therapy. Yay for swimming! If our DDD appeal gets accepted I will get this one going.

- Benik Vest - Help with her lack of core strength. I asked for a price quote from the company but I have a feeling it could be unaffordable.

That's where we are at. If anyone else has any ideas I would love to hear them.

New PT

Today we had OT from 9 to 11 and then PT at 11:35. We LOVED the new PT despite the fact that Abby was exhausted from all that work. Maureen (the new PT) had awesome direction for Abby and has some new goals to work on. I am very pleased overall. She focused in a lot more on the issues that have been plaguing us (safety and falling) so I an excited to get started. We will stick with this time slot this week but she can move us to a better time slot in a couple weeks.

Oh, and Go Phillies!!!

Stupid, Stupid 6 month review...

Well, it went terribly. Gracie's half (which thankfully was first) went great. She met her old goals. We set new ones. She is continuing her once a week OT and once weekly Speech. I am very pleased with that part.

When we moved to Abby's half of the 2 hour session it got a little uglier. I will start by saying that about a month ago I called our service coordinator (with whom I have had a good relationship thus far) to talk about the situation with Yemi. I explained how disappointed we have been with her lack of creative therapy and that she hasn't come up with anything new for her in over six months. Long story short, nothing was done about it.

Ok, back to today. Before Yemi arrived it was myself and my Mom and then our service coordinator and our PT waiting. I began by telling the service coordinator about how disappointed I am in her growth and development over the past six month. We have very unclear goals, no good strategies and Yemi herself told me that she is running low on ideas of how to handle Abby. She listened to me talk for a while and didn't say anything. Instead of saying anything of any value she starts saying how she wished I would have called her about it (which I did but she just never followed up with me) and it should have been handled differently. I was so upset. I am trying to do everything the "right way" and all she can say is how I handled it wrong. I thought these meetings WERE to forum to bring up concerns. I was so angry that I started to cry (God, I hate that I cry when I get mad...). I was so upset I had to excuse myself to pull it together.

The thing that pissed me off so much was that she was basically saying that maybe Abby has hit the wall. That she may not do much more or be more coordinated. That I should get her the helmet that we have been discussing and an elbow crutch and that will "keep her safe". She had the nerve to say that maybe playing on the playground just "isn't her thing", maybe she will like art. REALLY? ARE YOU KIDDING ME? I am supposed to tell my two-year-old that she can't play on the playground.

I just can't believe they are so willing to give up on this kid who has worked so damn hard. I have worked so damn hard. I am so sick of having to push and push and push for every little thing. Does no one else believe in her? Honestly, it left me feeling heartsick. I still am teary eyed thinking about it. Being told that my kid is just disabled so deal with it was one of the hardest things I have ever had to hear. It hurt... a lot. To me she is just a kid. A normal kid who wants to play and climb despite being "disabled".

Things calmed down after I told them that I would not accept defeat. She is not done what she can accomplish and they will work with her. It was not an easy meeting with Yemi as we basically "let her go". That sucked. After a year and a half the service coordinator told her that maybe she had done all she could do with Abby. What made me know I did they right thing was when Yemi agreed. No fight. No disagreeing. She just agreed. So, that's that. We will be getting a new therapist, hopefully soon. And hopefully we can find someone who gets the fact that I am not willing to throw my hands in the air and say she is done. I don't think I have that in me.

The long and short is that we are getting a new PT now. I guess that is the silver lining.

Where they are at

As a part of the prep for our 6 month EI review tomorrow we had to do some assessments and paperwork for each of the girls. One of the telling pieces of that process is when they give me the age equivalents of where the girls are at. While I realize there isn't an exact science to it I always find that number to be very interesting. We didn't do ages for OT since we missed last week (our OT was away) but that number is less relevant anyway. For Gracie her receptive speech is between 22 and 24 months, which sounds about right. Her expressive speech is around 18 months. That puts her about 9 months behind... a little depressing but about right. Abby's gross motor skills came in at a very depressing 15 months. I know that number is right nut knowing she is A YEAR BEHIND where she should be is hard to digest. This plateau she has hit has been a long one. I just hope that something can come out of this meeting so the gap doesn't keep getting wider and wider.

Pt Update

I wanted to give an update on our PT situation. I sat down on Monday and talked with Yemi about my concerns. While I was glad that I finally got her to admit that she too is not terribly pleased with Abby's overall progress I was less pleased at the possible solutions... she had NONE. She said that she plans to speak to other therapists for pointers and has suggested that we maybe go to a private medically based PT for an assessment. Is it just me or can anyone else smell the "cop out" here. I am still frustrated. I;m glad she's willing to look in other directions but disappointed that she can't come up with anything to help my kid at this point. If she is so lost than why the heck are we bothering every Monday morning (at 9am no less)??? Aren't we in EI so I don't need to do private therapy?

I will update more after the review on Thursday morning with our service coordinator.

Our Therapy Updates

This week both girls are due for their 6 month Early Intervention reviews. It is a time to evaluate and change goals and see how are progress is going.

Here are my thoughts on how things are going with each therapy and a quick rundown for why they still need each.

Gracie

Speech Therapy - The why is obvious. She is 27 months and just now starting to talk. No one has officially labeled a cause but what we have deducted is somewhere between apraxia and very poor motor planning skills. We adore our speech therapist, Cathy, as the woman is like a baby whisperer. She can get things out of Gracie that amaze me. She manages to get the worlds wildest child to sit still for 15 and 20 minute periods of time. Right now Gracie is saying about 30 to 50 words clearly and is attempting about 50 more. She signs very well. She is still VERY frustrated right now. She watches as Abby strings 5 and 6 words together clear as a bell while she struggles to say simple sounding words. Thankfully we're all getting better and better at understanding her speech. The type of speech delay that she has is something that won't go away overnight. It will likely require years of speech therapy. Thankfully we got moving so early we're hoping she will be understandable by kindergarten.

Occupational Therapy - Most people hear OT and think fine motor. What they don't know is that most OT's do way more than that. Our amazing OT, Nicole, again... completely and utterly amazing woman, is fantastic with the girls (she works with Abby too). Gracie has sensory integration disorder. I honestly thought that diagnosis was a load of crap and then I had Gracie. Kids with SID have a hard time navigating through sensory input (what you see, hear, feel, taste and smell). SID would fall at the mildest end of the autism spectrum, although what she has is nothing like autism it just happens to be on that same spectrum. In Gracie's case she has a high need for "input" which is simply sensory information. She likes to gather her sensory information through her gross motor system. If we leave Grace be on any given day she progressively gets wilder and wilder until the point that she is almost out of control of her body. She does what our OT calls "bash and crash" where she will jump and bump and knock into things in order to gain input. She also has a hard time integrating loud noises, strong smells, distracting colors, certain foods, certain textures and certain clothes.

OT for Gracie is instituting what they call a "sensory diet". It isn't a literal diet but it is spending time throughout the day "feeding" her sensory system by touch, taste, smell, hearing and sight. We use things like joint compressions and stretching, breathing, textures, heavy work (pulling or pushing heavy things), swinging, etc. to excite her sensory system at appropriate times throughout the day. Again, when I used to hear of families using brushing or joint compressions I would think to myself how the parents must be loony toons... NEVER judge unless you have walked a mile in their shoes.

Abby

Physical Therapy - As most of you know Abby has been in PT since she was 4 months old... the poor kid never met a milestone she wanted to reach on time. :D She has made up and down progress in the past couple of years but has recently stalled out. Her gross motor skills, muscle tone, strength and balance are very poor. We have had the same PT for almost a year and a half and lately we seem to have stalled out as a unit. Obviously this will be the toughest part of the 6 month review. I am not sure if Yemi (our PT) is able to meet Abby's needs. What she has is rare, really, really rare. They can't fix it. Her balance will never technically improve. Her hypotonia (poor tone) will always exist. So now we have to work on strength and conditioning to try to accommodate for what we can. Brian and I are thinking of perhaps getting Abby private, more intensive PT over the next couple of years. All we want is for her to be able to go on the playground with all the other kids at school but as of right now that is a long way away. It's hard as a parent. It's all so damn hard for her. To walk down a curb is tough. She can't walk in grass, or sand or water without falling. Her head is always covered in bruises. We are going to get her fitted for another type of helmet so she can play outside with getting a concussion. Needless to say PT is our roughest battle right now.

Occupational Therapy - Abby and Grace have the same OT, Nicole. Abby's OT needs are similar and dissimilar to Gracie. She also has SID but in a very different way. She, unlike Gracie, seeks "input" from more fine motor and oral based stimulation. She has problems with stuffing her mouth too much. He brain doesn't realize her mouth is full. She loves to play with things that are different textures. She LOVES to squish and squeeze things like soft food and play-dough for input. She also suffers from fairly severe ataxia. I stole this from wikipedia: "Ataxia is a neurological sign and symptom consisting of gross lack of coordination of muscle movements. Ataxia is a non-specific clinical manifestation implying dysfunction of parts of the nervous system that coordinate movement, such as the cerebellum." For her ataxia comes in the form of flapping, head rolling, tensing her muscles irregularly and other "odd" movements.

All in all Abby's OT goes well but the ataxia will never go away. Hopefully we will be able to change some of her ataxic behaviors so they look more "normal" by the time she goes to school. I'm thinking flapping is too easily labeled these days.

So we're plugging along. We have 4 therapy sessions a week in our house and countless hours of home therapy that I am taught by our therapists to provide. It isn't easy. In fact some days I downright hate it. It's stress for my kids. It's stress for me. I wish their little lives could be easier and filled with things other than various therapies and endless frustration. An excellent weekly reminder comes from our very dear OT Nicole. She has a son with special needs and a son that died from the same disease that afflicts her living son. She reminds me every week that my kids have never known any different. What looks to me like it hurts them like hell is all they have ever known. It makes them stronger and more persistent. I think she's right.

Compression Garment

Here is what a close to $1,000 compression garment looks like:



Edited to add: Our therapist brings this (I didn't buy one) garment. It is a part of her therapy for her sensory integration dysfunction. Who knows if it is helping but we're giving it a whirl.

Back to life

In other words back to the seemingly endless string of therapy. The week off was great but didn't feel very long as I look back. This week brings us PT tomorrow morning, Abby's social worker Tuesday morning, Speech Tuesday afternoon and OT for two hours on Thursday. Fun, fun, fun. :D

Denied for DDD

I think I may have mentioned a while back that we were applying for DDD for Abby. It would be money set aside for her therapy equipment, safety equipment and additional therapy and classes for her OT and PT needs. She initially got denied because she did not have an official diagnosis. It pissed me off b/c kids with much lesser needs get it all the time and yet she did not. When she finally got the RS diagnosis we supplied DDD with the new information and I figured with a diagnosis that states she will have long term special needs how in the hell can they deny her.

Well, they did. So some a$$hole who has never heard of Rhombencephalosynapsis thinks they know what it means or how it will impact Abby lifelong. I just wonder why in the hell it has to be such a huge freaking battle. I'm not asking for more that her fair share. I don't need tons of money. I just want to put up a safety stair rail and find a gymnastics class that can meet her needs. I don't feel like I'm asking all that much here.

So they want us to reapply when it has been a year. I am hoping they mean a year from her initial application because that would be Sept. And if they deny her this time I will be appealing it until the cows come home.

So stupid.

A little hiatus

No, not from blogging... from therapy. We have been a little fried lately. All of us. The girls are sick of the same old. I am sick of day in and day out therapy. Having people coming and going almost every day of the week gets old. Our very smart OT had a great suggestion: TAKE A WEEK OFF! It almost never dawned on me that we had that option. I see our therapy as so much a part of what we do that I don't think to just simply cancel. So we have told all of our therapists that next week we are on a mini-vacation and will see them the next week. I am hoping it will give us all a rest and let us start again fresh in two weeks.

Made the call

I finally got the guts (for lack of better word, I am not lacking on guts) today to call and request a new ST. I met with our social worker yesterday and she assured me that by asking for a new ST we would NOT be deemed the biggest PITA. I haven't heard back yet but I feel relief at having called.

Our therapy sessions

It seems like it's been a while since I managed to update about our EI stuff (for lack of better term). So here's where we're at. We do PT, ST and OT each once a week for an hour (sometimes more). We will be adding another session of OT for Gracie next month as her OT needs, mostly sensory stuff, are not being met by her ST. For those of you who aren't familiar, here is the rundown of what each is and why we need it.

Physical Therapy (PT) is for Abby. I think most of you have a sense of what this is for. We've been working with Yemi, our PT for about a year and a half of Abby's two year life. Long story short we LOVE Yemi. She is like an extended member of our family. We focus on her balance, coordination, gross motor skills and strength. Right now she is focusing a lot on core strengthening and limb strengthening. Since we found out about her cerebellum issues we now know we will be dealing with lifelong motor, balance and tone issues.

Occupational Therapy (OT) is for Abby now and Grace next month. We have quickly fallen in love with our OT Nicole. I wish I had that woman's energy. :D OT is for fine motor and sensory issues. Abby's sensory issues are mostly oral. She tries to fill her sensory needs through her mouth so she has a terrible habit of shoving food, her hands or her toys as far into her mouth as she can (for sensory stimulation, or stimming) which can create choking and gagging problems. She also flaps her arms, twirls her arms and has serious rigidity problems with her arms and legs. Gracie's sensory issues are much more global. She looks for sensory input in much bigger, gross motor ways.

Speech Therapy (ST) is for Gracie. We work with a lady named Rachel. I think I've blogged about her before. We have some SERIOUS differences in opinion and styles but I am being uber patient to try to get Gracie's needs met without putting back on an EI waiting list. Gracie has pretty marked communications delays. She's almost two and can only say about 4 or 5 words. At this point she should be stringing 3 to 4 words. She can sign very well for age and we are working on that in ST. Her speech delays are most likely caused by the sensory and motor planning issues.

In addition to these therapies we have our wonderful social worker who is helping us in our attempts to get Abby enrolled in programs to help meet her needs. We also have a terrific service coordinator who makes sure everything on our EI "workload" runs smoothly. We have our neurogeneticist, genetic counselor, neurologist, neuro-ophthalmologist, ophthalmologist, allergist, gastroenterologist, pediatrician and our army of labs.

Sometimes it seems a little ironic that it took an army of people for us to get and stay pregnant. Here we sit with yet another army. Sometimes it makes me feel a little self-piteous but then I remember how frickin lucky I am that an army is available. So thank you to our personal army. You are all rock stars in my eyes!

First OT Session

Yesterday we had our first meeting with Abby's new occupational therapist. She was FANTASTIC. She is a Mom of a special needs child herself and has suffered the loss of a child shortly after birth due to a genetic mutation. As odd as this sounds knowing that she has dealt with some of the issues we deal with endears her to me. She was so energetic and so open about her own family experiences. She was so wonderful with the girls (BOTH OF THEM!) and was a breath of fresh air after our ST experience.

We focused a lot on Abby's feeding issues. Because of her sensory issues she tends to stuff her mouth full until the point that she cannot chew. It's partly her weak chewing muscles and partly seeking sensory input. Spicier foods will help a little but we have some great strategies to work on. Hopefully we'll be on our way to self-feeding and using utensils!

We also started working on her flapping, arm and foot twisting and rigidity. I think the OT is going to work so beautifully in conjunction with her PT.

Tomorrow morning we are headed to the hospital early for her high res. MRI. She has to be sedated so she has to fast. I hate having to try to hold her off with no food. She is an eater so it isn't easy. She can have jello and juice up until 7am so we'll get her up early to load up on those things. We're just praying that this MRI yields a lot of great information for the neurogenetics team so they know what genetic tests to run. Fingers crossed...

Crappy Speech Therapy Session #2

Today was Gracie's second speech therapy session with our new therapist Miss Rachel. From the outset our rapport wasn't a whole lot better. I intentionally rolled my eyes when she asked me to wipe all the toys the girls put in their mouths. She got the hint and just said she would wash all the toys. A small victory for me. It doesn't sound like much but two 2-year-olds who are cutting teeth put EVERYTHING in their mouth. Envision me spending an entire hour following them around and wiping their toys. So not gonna happen.

The session went okay. Rachel is not exactly my cup of tea (pushy, loud, obnoxious) but I was patient. At the end of the session she handed both girls pens to "color" in the middle of the living room. I allowed it since both girls quickly set in to drawing on their paper. When Abby put the pen in her mouth (um hello, 22 months old, corrected age of about 18 months and cutting teeth... imagine her putting something in her mouth) Rachel told her not to. Ok, I told myself, be patient. When Abby did it again Rachel says to her "if you put the pen into your mouth again I am going to have to take it away". I know she is a speech therapist but sounded to me like she *might* have been talking a little over Abby's head. When she put the pen in her mouth a minute later (surprise, surprise) she took the pen and said "you will have to get used to when Miss Rachel says no it means no". I was flabbergasted. Remember, she is reprimanding ABBY not Gracie who she is there to work with.

Not feeling like myself lately I quietly huffed, rolled my eyes and ended the session as quickly as possible. A month ago or a month from now, when I am not exhausted from moving, therapy, work, etc. I will probably have it out with the woman. Today I chose to be patient and see what happens during our next session. We have a week off so hopefully by the time we are moved in and slightly unpacked I will be more like myself. Honestly, I was a little afraid that if I opened my mouth today what came out would not be easily taken back.

I am trying to be patient so as not to piss of the people at EI who we really do love and appreciate. I also hate the thought of having to go back on the waiting list and have Gracie miss more time. All in all Gracie did well. She did some new signs and tried to say More and Hi. I am very proud of how well she sits and pays attention.

On another EI note we have been matched with an occupational therapist for Abby. We will meet her next Thursday. So we will be in full swing of PT, OT and ST. Next week we also go to CHOP for Abby's ophthalmologist/eye surgeon for a follow up. Then in Saturday we have her high res MRI. She has to be sedated for that one.

Gracie First Speech Session

Today we had Gracie's first Speech Therapy session. First off I wasn't crazy about our new therapist. She was kind of weird on the phone and didn't call to say she was coming until yesterday.

When she came she was a little abrupt and not terribly friendly. She didn't ask me any questions at all about what she is doing or saying. When I tried to talk about what my concerns were or what Gracie is/isn't doing she kind of brushed me off. She brought toys and every time one of the girls put it in their mouth she made me clean it (hello, take them home and wash them). At one point she reprimanded Gracie for not cleaning up. I had to hold my tongue. I'm pretty sure my job is the parenting and her job is the ST.

To put the icing on the cake she told Abby that she was whiny (which she was, but still) and commented on her eyes being slightly crooked. Guess that eye surgery was for nothing. :(

I am just hoping it gets better next week.

Whine fest over

After yesterdays whine fest I realize I had not really provided anything conclusive, which is what I set out to do. Here are the specific issues each of our daughters are now dealing with:

Gracie - With very minimal speech Gracie is now requiring ST. Some of the people in our life are of the "she will talk when she talks" mind but that (IMO) is denial. She is almost two and has almost no speech except ASL. So the therapist will be working with strategies to get her talking. Part of her lack of talking is because of poor motor planning. The part of her brain that creates speech is having a hard time getting her mouth to do what it needs to do. The motor planning problems also display themselves in some of her other motor skills. She is behind for her age on fine motor skills so we will be working hard on that in therapy. The last part is the sensory issues. Both girls have a Hyporeactive Sensory System, meaning their bodies crave more stimuli than the average individual to feel like it is working at optimal performance. This can easily lead to being overstimulated. This is something we will work very hard to fix before the girls are school age.

Abby - You all know most of what Abby has been dealing with for a long while now. She is severely delayed in her gross motor skills, overall balance and tone. The neurogeneticist found that the structures in her brain that we knew were impacted are more impacted than initially thought. Her cerebellum problems are of particular concern.

Here is a quick and dirty explanation of the cerebellum thanks to wikipedia:

The cerebellum (Latin for little brain) is a region of the brain that plays an important role in the integration of sensory perception, coordination and motor control. In order to coordinate motor control, there are many neural pathways linking the cerebellum with the cerebral motor cortex (which sends information to the muscles causing them to move) and the spinocerebellar tract (which provides proprioceptive feedback on the position of the body in space). The cerebellum integrates these pathways, like a train conductor, using the constant feedback on body position to fine-tune motor movements.

Because of this 'updating' function of the cerebellum, lesions within it are not so debilitating as to cause paralysis, but rather present as feedback deficits resulting in disorders in fine movement, equilibrium, posture, and motor learning. Initial observations by physiologists during the 18th century indicated that patients with cerebellar damage show problems with motor coordination and movement. Research into cerebellar function during the early to mid 19th century was done via lesion and ablation studies in animals. Research physiologists noted that such lesions led to animals with strange movements, awkward gait, and muscular weakness. These observations and studies led to the conclusion that the cerebellum was a motor control structure.[1] However, modern research shows that the cerebellum has a broader role in a number of key cognitive functions, including attention and the processing of language, music, and other sensory temporal stimuli. -- Wikipedia

So this new information changes her probable outcome. Where we used to be pushing for a fairly normal integration into school we are now looking at lifelong problems with her motor skills and balance. There are aides that can be used for her to walk more normally but I don't know if she will ever walk like a typical person. That part is hard to take as a mother. Because Abby has surpassed the doctors expectations I fully anticipate that she is going to shatter what they are telling us she can achieve. The kid doesn't exactly like to listen to what the doctors have to say.

On top of the gross motor issues she is delayed in her fine motor skills and has the same sensory issues as Gracie (these problems are very common in twins).

So we have our work cut out for us. Three separate therapists a week on top of our crazy schedule. Should be interesting.

This will probably be a long one

I promise to *try* not to write an entire novel here... no promises. Today we had our IFSP (indiv. family service plan) meeting for Abby. It has been one year since she started EI (early intervention) meaning she has been in PT for a year and a half (we did private PT before EI). We met with our physical therapist (Yemi), social worker and service coordinator. The OT couldn't make it. We talked a lot about her goals for this year. Her progress. The news we got this week from the neurogeneticist. The more I talked the more sad I felt. As we discussed hoping my daughter will walk someday without a walker (which is looking like more of a maybe than a definite), ramps, rails for the new house, walkers, long term needs and therapy I just wanted to cry. I know we can handle it. I know Abby will easily outshine the limits they put on her. That being said have you any idea what it is like to have someone (for the second time) tell you your kid won't be "NORMAL"? My daughter probably won't play soccer or walk normally. She will get made fun of. She will hate me at least once in her life for making her do PT, OT, etc (as we now know this is something we will be doing for years).

We survived the day when we were told, at only the halfway point of my pregnancy, that one of our daughters might not make it and if she did she would never walk or talk. We survived watching her miss almost every milestone a child should reach. We survived being told she needed surgery. We survived being told that her brain was not formed properly and would impact the rest of her life. We survived this past week when we were told that things in her brain looked worse than we thought. Surviving sure isn't the same as enjoying. Every day is a struggle. As struggle to fit everything in. The endless therapies, appointments, meetings, assessments, hospital visits and tests. Dealing with the needs of not one special needs child but two. Gracie is now dealing with her own set of ST, OT & sensory issues.

Thank the good Lord above that my daughters can think. They can love. They can laugh. They can talk (well... eventually for one of them). They are cognitively perfect, ahead of the game in fact. I am lucky. I know this. But it is still hard.

Abbys OT Assessment

Finally, after almost a month of waiting we had Abbys OT assessment. Yemi and I have known for months that OT was most likely in her future but we just didn't know when was the right time. Looks like now is that time.

I know it will look like I am skipping a lot here but with two assessments and the neurogeneticist this week I am sick of all the medical and therapy talk. I know... bad mom.

So she definitely needs OT. Her fine motor skills are at about 11 months with some skills up to 18 months. Her self-feeding skills are at 15 months with a couple skills ranging up to 20 months. One of the bigger concerns is like Gracie she has a lot of sensory issues. Both of the girls have Sensory processing issues. They both have Hyporeactive (High Threshold) Sensory systems meaning they need a lot of sensory input to feel like their nervous systems are working fully.

The occupational therapist today was great at explaining everything is such beautiful detail. She gave us some amazing strategies to fulfill their sensory needs (everything from playing with Playdoh to finger painting), boost self feeding skills (spearing big chunks of food and biting off of it), increase fine motor skills (puzzles, playing with blocks, searching through rice for toys) and helping re-organize them when their sensory systems get them riled up.

I am so happy that we have the ability to give these gifts to our children now. Better at 2 than at 8 I guess. All of this extra medical and therapy stuff has been a tough pill to swallow right now. It just seems like our plate is heaping. Guess I will have to add a little more caffeine to my day. :D