Miss Lily's Pad

Hospital World

noreply@blogger.com (Karen Rock) — Wed, 09 Dec 2009 15:48:00 +0000

Lily went in for a cardiac cath on Monday November 30th. We ended up staying for 4 days total. It was going well the first time Dr. Wax, Interventional Radiologist, came out. Then he said that he found some collateral arteries . So he coiled/plugged two of them. That should have made her oxygen levels higher. Finally he came out to say that they found blood in the lung in the lower left lobe which was blurry on the xray we later saw. In the end, we came in with Lily sating in the mid 80's and left with a kid sating in the 78 to 84 range and added Viagra/Revatio to her list of drugs. It was either that or go home with oxygen. I am waiting to hear from our card about the discussion that had about further steps for Lily they had in conference on Monday about her.

The best thing about our stay was again the nurses. They rock!!! It was strange being back in the PICU for the first time since 2007 after her Glenn. They were fantastic. Andrea, Rachel, Megan, Tommy...kept me calm and thinking about other things like travel and language, two of my favorite topics. aside from LILY!!

One of the nurses said that she knew how to take care of these kids in the hospital, but when her son was born, she had no idea! I would have never thought of that. 5 years ago I never would have guessed that now I would be able to understand when someone says " We are going to go in an explore the LPA and coil any extraneous arteries." I could sound like a nurse of a doctor now.

Speaking of medical issues, my cousin Cindy was featured on Mystery Diagnosis on the Discovery Health Channel this past Monday night at 9pm CST. She has MPA or microscopic polyangiitis. I had no idea how absolutely painful and invasisve this disease can be to your life. I hope Cindy stays in remission! Get more information at http://www.vasculitisfoundation.org/microscopicpolyangiitis.

Lily is starting to want to stand now and not fighting us when we help her to do it. She still fights the PT/OTs though. Big surprise.

Our Anniversary

noreply@blogger.com (Karen Rock) — Mon, 26 Oct 2009 10:04:00 +0000

Jim and I have now been married 6 years yesterday. It almost came and went without us both acknowledging it. We had a good laugh over it. We've been so busy with the move and Lily.

I was married once before. It was rather like being on an elevator with someone where you just happened to be there with at the same time. You weren't "together", you were just there. He would get on and off occasionally while I just stayed there, alone. And eventually I gave up and got off, and never looked back.

Eventually I met and married Jim. He is the most sentimental, thoughtful, creative, funny, sensitive man --not to mention great dad -- that I know. We have been through alot in the past year. And it seems like we have had to say that every year -- my cancer, Lily's birth and the following chaos, moving, and some other things I won't go into. But the whole time he has always been there. It is just fact that we are in this together. We didn't exchange cards or gifts this year, but just knowing that he is here for us is the best anniversary and life present I could ever get.

I love you Jim.

Fall Fun 2009

noreply@blogger.com (Karen Rock) — Sat, 17 Oct 2009 22:35:00 +0000

Just chillin'...LITERALLY!

I pick THIS one!

We took Miss Lily to the Cosley Zoo nearby again to see if she would pay attention to the animals. She didn't. I think my husband had more fun looking at and photographing a few of them. I was busy wondering if she was warm enough because I forgot to bring a blanket. We have been using a Peg Perego stroller that one of my sis's-in-law gave us that Lily loves. It actually has a cover that we could zip around her legs, but I forgot that too. What kind of mother AM I?? Well I know!:)))

Mommy and Lily

Daddy and Lily among the pumpkins

Moving On

noreply@blogger.com (Karen Rock) — Thu, 08 Oct 2009 19:17:00 +0000

Life throws crveballs ocassionally and one is that we had to move. We are still getting settled in altough our furniture made it here 2 weeks ago. I'm sad that Lily won't have her own swingset anymore and the dogs won't have a larger place to run and poop. But it's been good so far. We got to paint all the rooms the way we wished they had been at the old place. Lily's room is now shocking green/yellow color. It's Valspar's Tender Bud, but didn't turn out quite like the paint chip. Nonetheless, what's important is that it matches her personality! Bright! Happy! Feisty!

Speaking of That Girl, she is babbling up a storm lately with her own long sentences of Lilyisms. Duke-ah duke-ah duke-ah, namenahnamenahnamenah...In the morning I just lie in my bed and listen to her when she wakes up. She is definitely my daughter and Jim's being that she talks sooo much. Now if we can get her to say actual words. Our DTH has been impressed and says that she says things very clearly which is a good sign.

On the AT front we are getting a gaittrainer (KidWalk), a stander (Easy Stand) and a a chair (Leckey) which are all awesome. She has tried all but the stander. We have a great equipment guy that our Respiratory PT uses for Ei and his day job and he is awesome. Vince (www.pinnaclerehabsolutions.com)doesn't just walk away after fliping some switches and knobs. He makess sur eyou are absolutely comfortable withe the equipment and that the child is comfy in it too! We were going to go through Easter Seals for some communication AT evals, but they are months behind. So we are looking to Rehab Institute of Chicago which has a decent rep. We have a friend who brings her daughter there for ortho.

Please pray for our friend Moriah, www.momentswithmoriah.blogspot.com, who is a another little Charger who has spent almost a year in the hosital. She is much more complicated than Lily and she and her family are fantastic, warm people.

May 2010

noreply@blogger.com (Karen Rock) — Thu, 17 Sep 2009 21:32:00 +0000

Just want to make sure that any Illinois families are aware of this conference.

I received a flyer that said:

Save The Date
Family Leaders Conference
Illinois Family Leaders Collaboration Group
Presents

The Fourth Annual
Parent Conference

Resources and inspiration for adult family members and caregivers of children with disabilities

Saturday, May 1, 2010
Villa Maria, lake Springfield
Springfield, Illinois

Childcare will not be provided

For more information contact Mary Smith at STARNET
mk-smith@wiu.edu

I went to the one last year in East Peoria and it was so nice. Great families and information. Got to meet some other Charge parents there:).

Stomach Flu

noreply@blogger.com (Karen Rock) — Thu, 17 Sep 2009 21:16:00 +0000

Anyone else having problems posting photos on their blog? I keep doing what I always do and get a ton of HTML garbage...

Lily has just not been herself all week. Well, it sort of started the week before. She just was very crabby constantly. This week she threw up twice and was lethargic and very quiet. She is just now starting to get her babble back and some energy. We got to cuddle alot lately which is pretty new for us. This morning we laid in my bed with the Melissa and Doug farm puzzle on he rlap and watched Word World and Super Why. She watched every moment and I sang and read along so she could feel the vibrations. She seemed to enjoy herself.

We Love Autumn

noreply@blogger.com (Karen Rock) — Mon, 07 Sep 2009 05:21:00 +0000

So it's been awhile again. thanks to all of you have written and or posted too. i will get back to you. We are in the process of moving. I won't go into detail but we are moving over the month of September and at the end planning on having a giant garage sale.

We saw Lily's cardiologist last week and she said that we can wait on the cath for 6 months! Plus Lily has finally passed to 20lb mark! She has also passed gas:) LOL. Ok it's late. She has been doing ok on this new Elecare formula that we started at the end of July. She still fights eating by mouth. She has had a few very bad gassy episodes in the past week. We will have a meeting with her nutritionist coming up soon so we shall see. We just had her last annual IFSP. We have a new therapist on the team -- a Respiratory PT. I would have never have thought of this until Lily's nutritionist asked me to take her shirt off to see how she breathes. She referred us to Brian who is just excellent. Lily is not breathing correctly because of her heart surgery scar (as well as lots of other things) -- she doesn't use her diaphragm much and uses her neck and shoulder muscles much more. I think that the next Charge Conference should have Brian's mentor, Mary Massery, speak on this issue.

And I finally gave in....and joined Facebook. i guess Twitter is not far behind. Suddenly I have so many friends:)). I hope all of you ar ehaving a wonderful Labor Day weekend!

Hospital Time

noreply@blogger.com (Karen Rock) — Fri, 31 Jul 2009 14:07:00 +0000

Lily and I spent the night at Children's in Chicago. She had a CT Angio yesterday and then we stayed for 23 hour observation on 5. They have scheduled her for a lung perfusion scan this afternoon. Last Tuesday she had a cyanotic episode during therapy. We went to our local ER that has a Children's outpatient center. Her cardiologist came back from home at 11pm to do an echo when LIly fell asleep. She cooperated til the end when she woke up. Her stent in her LPA still looks good.

This past weekend we went to the 9th International Charge Syndrome Conference near Chicago. So very near us! It was great to see so many Charge families in one place. Such great speakers as well from all over the US, UK, Canada and Australia. We can't thank them enough for their care and concern and their information!! When we are back home I will put photos and videos up.

The Parent Institute and Politics

noreply@blogger.com (Karen Rock) — Mon, 22 Jun 2009 19:48:00 +0000

GO WHITE SOX!!

Walk out the door today into a wall of humidity. Take a shower, step outside and be ready to go inside to take another one. Lily and I are going nowhere outside today. Once again I have been behind on the blog. It's just so many things happen every day that it's hard to write it all down. And please forgive me for the hyperlinks listed below as they are formatted properly I don't think.

Sleeping on Hugo The Hippo

On the Road

Jim, Lily and I took a trip June 7th for the week down to Jacksonville Illinois, home of the Illinois School for the Deaf http://www.morgan.k12.il.us/ISD/ for the Parent Institute http://morgan.k12.il.us/ISD/pdf/pibrochure2007.pdf. It was one of the most emotional, stressful times we have had since Lily's first heart surgery. We stayed in the dorms there and had a pack and play for Lily. We were lucky enough to get a room with a bathroom in it! There was barely enough time take photos between meals and evals and appointments. We will be receiving a CD with photos and videos of our time there though. I will post it when we receive it!

Lily got to go to preschool every morning while we went to group counseling, sign language class and lectures on things like cochlear implants, different methods of communication (ASL, Signed English, Cued Speech, etc). Every afternoon while we were at another lecture or an appointment, she would get to hang out with great caregivers in the downstairs living room of our dorm. We had one night where the guys from the ISD football camp ran "Deaf Town". We learned about equipment for a deaf/HH home like fire alarms with lights, Sonic Boom Alarm clocks along with Blackberrys for texting your friends, TTY phones. We had to "order" food at a restaurant in sign, learn the correct ways to sign No and ways to sign expressions using facial emotion. That was just one evening and we could have used a whole afternoon so we would have a longer chance to talk to the ISD football team about their lives as deaf/HH teens.

Lily was in the Frog class in Classroom B. She ended up at graduation as the Feisty Frog. We have the inflatable frog they gave us that says FIESTY on it on top of her armoire in her room. Whenever we ask "Where is Feisty Frog?" she turns around and points straight to it. Most of the time that is unaided! Go Lily!

Ok now I have to go off on a political bent because ISD and Illinois School for the Visually Impaired (also in Jacksonville) are at risk of being closed as of July 1st if the "50% budget" is not changed. THIS MUST NOT HAPPEN. If you are in Illinois, please call your legislators TODAY to demand a tax increase and a budget that reinstates human services.

Michele Westmaas is one of the fantastic moms I have met on my Charge Yahoo Listserv. She has a blog at http://momonamissionblog.blogspot.com/. I have been on her case to start writing again and I hope she does but please read some of her past pieces. She was one of the presenters at the Parent Institute as well. She spoke about her experience with her daughter Aubrie and IEPs. We learned to remember the phrase "It's what my child needs and what's appropriate" and not to use the word want. Get a copy of the board of Ed Blue Book and let Lily play with it, put a coffee cup on it. You want to at least LOOK as if you know what you are doing. Also remember that if you are getting emotional during the IEP that you are the one in control and can take a timeout when you need to (me emotional? what?. This info will be coming in handy soon because we will be touring a possible school for Lily in September.

At the Institute we made the decision that ASL was the way to go for Lily. This is not just a little choice for her either. At the Institute Lily was evaluated by a psychologist, audiologist (Beth from Dr. Young's at Children's), a vision person, an Early Childhood person (Karen is awesome!), Dr. Snyder ENT from Northwestern/Children's. We have asked to Beth get with Dr. Young to review the MRI Lily had ages ago and see if she is a candidate for a cochlear implant. I have a list of at least 30 things to do or to look into.

It was overwhelming to get all of this information. We are so blessed to have been one of the 30 families that was able to attend. The people down there we would like to thank are Sue Brosmith, Lori McKenzie, Dr. Nancy Scott, Dr. Greg Long (GET IT IN!), the ISD Football players, the daycare providers in Preschool and the Dorm (Kate and Michael and the lady who made Lily two little bags) as well as the ISD football team and a ll the families who added to our Sponge-like experience downstate. Thank God for Parents Night Out!! (Dolly it's DSCC NOT DCFS:))) I hate to think that this may have been the last year for the Parent Institute.

Silly Lilly!

Easter Lily 2009

noreply@blogger.com (Karen Rock) — Thu, 16 Apr 2009 06:39:00 +0000

We celebrated Lily's birthday this weekend although her birthday is 4/14. This year she did not have any tantrums when everyone was near her and she actually started playing with some thing right away that she received. usually she has to be exposed to toys more than once to want to even touch them. My parents got her a Vtech helicopter that is a real winner with her. My brother and sister-in-law got her a Leapfrog Lily doll:)). We still have to get that out of the box. She got lots of clothes from my husband's side of the family as well.

I can't believe that she has made it this far! We are so happy to have our little girl still after all that she has been through. God Bless RJ and Seamus who we still think of often.

Long Time No Lily

noreply@blogger.com (Karen Rock) — Tue, 10 Mar 2009 23:22:00 +0000

Ok..so you noticed there was nothing new for a while and I heard that Lily fans everywhere were clamoring for more!!!

As of December 31st she decided that she WANTS to sit up and stay up. Nothing like walking into her room and there she is hanging her legs through the slats of her crib and ALL the toys are on the floor...Wow!!! And TODAY just today she decided she would try standing more than a little but at our coffee table in the living room. When she started to get tired after a record 10 minutes she started leaning her butt back against the couch and finally slid to floor with her legs scrunched in front of her.

We just had her 6 month IFSP and are going to try to find a stander that can be converted into a walker. Hopefully EI will be able to find one from a DME company that is used so no one has to spend tons of money on a customized one.

January 14th our new niece, Emily Grace was born. Mom and Dad are doing great. Emily is having issues with gas.

On January 21st we spent two nights at Children's in Chicago. We had a nasal dilation, ear tubes placed, an ABR and an ASSR. We had to fight at a ENT appointment prior to that day to get an ABR. i won't mention the name, but it;'s the ENT we use for her ears. I said I wanted the ABR. Apparently that wasn't good enough so I had to mention that the aud at Easter Seals thought it was a good idea. Then they said ok. The ENT who handles her nose, Dr. Schroeder, we love. When we arrived for the surgery he said "What? I thought one of the reasons for all this WAS an ABR." Well she did not change over one year. We were going to have another hearing aid put on her bad ear, her left. But apparently after the ASSR said there was really NO hearing, there would be no binaural benefit.

We are trying to add a speech ASL person to our team too. the one we wanted lives too far and will not come. There is another option but i don't know who that is.

One terrific thing that happened (thanks to Dr. Schroeder) was that I met another Charge family from south Chicago. they have a 4 month named Ashley. She is cute as a button! I passed along as much info as i could about the Charge Conference (they already knew), the Yahoo group for both Charge and CHD and also CICircle I think. They are great advocates for their daughter and have a terrific attitude.

In February we saw a Neurologist, Dr. Swisher. Lily's left eye has been twitching occasionally. We were also curious about her mouth which is kind of lopsided when she cries or laughs. He diagnosed her with Asymmetric crying facies which is frequently associated with cardiac patients. We will have to set up an EEG for the eye issue.

Thanks to those of you out there who have asked about Lily -- whether from my old work, Jim's work, our Charge family, or our EI teammates:)!! It makes life easier to know you are not alone.

Christmas 2008

noreply@blogger.com (Karen Rock) — Tue, 30 Dec 2008 06:34:00 +0000

We had a great Christmas. Christmas Eve we spent at my parents with my brother, Chris, and sis in law Mary Jane. During dinner my mom tried passing me the wild rice, knocked my red wine glass over and succeeded in marinating not only the floor but our Christmas ham. It was delicious (the ham, not the floor!). We thought we should start that as a new tradition and maybe someday Lily can spill the wine!

Lily we found is not fond of wrapping paper or unwrapping things. We got a wonderful gift of the Vtech Spin N Learn Top just before Christmas from Emily our Speech therapist:). Lily pushed it away. Oh well! She loves the toy, just not the paper.

She is a very blessed and lucky girl to have great grandparents and cousins who love her so much!

Lily is a Trooper

noreply@blogger.com (Karen Rock) — Thu, 18 Dec 2008 07:41:00 +0000

So i haven't written in a while...To sum things up. Lily had and still has fluid in both ears. Going on a month and 1/2 now I think? So she has been without her hearing aid for some time. She can't wear it because it would distort the sound that she receives from it.

Fast forward to December 12th...I took Lily in to see her ped in the morning because she was miserable. She was screaming and screaming like no other cries we had ever heard for a few days before that. I was told she had a cold. no fever though. I took her that afternoon to see her ear ENT doc. She said that it would be ok for our nose ENT doc to do ear tubes (FINALLY!!!!), as well as the nasal endoscopy. When I asked for an ABR, she kept saying Why? Hello!! I want to know if she is declining. Mom. Didn't seem good enough for her so I mentioned the aud at Easter Seals. Then she said ok. So we are shooting for January 21st. It will be an overnight stay in the obsevation unit. So after that I have seriously considered switching her ear ENT to a great doc at Comer's. We shall see.

So I am trying to change her diaper the next day, Saturday. Her crying is so heart wrenching that I get nauseous, call for Jim to take over and run to the bathroom. I just could not bear it. When she is not sleeping she is just crying. So we took her to the ER at our nearest hospital ( the one where she was born). They took an xray to check things out. We swapped out her Mic Key button a few days before and that was fine. It ended up that she had a severe case of gas. We ended up with a great nurse that had once worked at Children's, Deanne. She had worked for Lily's former GI as well. She said that we should have been told to vent Lily via her Gtube. Well, DUH, I thought. I felt awful because it was such a simple thing. But no one told us. Not the ped surgeon who put it in, not the NP, not a nurse. I spoke with her hearing therapist on Monday and she said we should try and do it before every feed if we can. And, I thought, before spending 20 minutes giving her meds so it doesn't all come back up. I think I will be calling one of the GI guys that her ped suggested after all.

After venting we got our old Lily, Lily Bean, Bean-Bean, Sweetie Bean back! She is all smiley and happy and babbling again. because of the cold we had to cancel her Video Swallow Study. Hopefully today we will be able to reschedule it soon.

Caught on film just before OT this week

And during PT this week

This ISN'T Speech therapy day??

Stacking therapy

See...this HAS to Speech day! Isn't this my sippy cup??

Thanks Giving

noreply@blogger.com (Karen Rock) — Mon, 24 Nov 2008 12:07:00 +0000

I was reading an article today about a man who killed his autistic son and then himself. Morbid way to start this post I agree but it made me think about how grateful I am for Lily.

She is more than just this squeaking, babbling, squirming, hearing aid-pulling-out, giggling, crying, smiling sleepy, pooping toddler now.

She has brought so many new people into our lives. It started at the hospital where she was born and then at Children's in Chicago. We met great nurses, NPs and doctors. I met people from all over the world at the Ronald McDonald House. Then through Early Intervention we have met not only great therapists, but warm, friendly caring individuals.

I am thankful also for all the people that prayed for Lily through her surgeries. I am happy I still have contact with the people I used to work with that kept me supported and laughing through everything. When I was working I spoke to people all over the country and learned through some of them of their special needs children and their struggles and triumphs. It made me grateful to think of how easy Lily is -- it gave me perspective I didn't have before.

I am grateful to the moms that I met with heart kids at the hospital (take that HIPAA!!) and online. To Charge families I have met through the yahoo listserv. Every day they make my life easier by helping me vent just by reading their comments and wisdom and humor.

There are all kinds of families in this world and I am happy to be part of them and overjoyed to have Lily and Jim with me. Thanks to my husband's side of the family and to my brother, sis in law and my parents. I love you all.

More Doctors?

noreply@blogger.com (Karen Rock) — Tue, 18 Nov 2008 05:07:00 +0000

Lily had her hearing therapy today with Cathy who is a deafblind specialist and sees another of our local Charger families. I heard that Christian is back home now and laughing and feeling better!! Yeah "Little Chicken Man"!

Cathy noticed that Lily's left eye was squinted and fluttering. She was having a muscle spasm in her eyelid. I told her that we had seen this before and that her eye doctor didn't make any big deal out of it. Cathy pointed out that her whole face on that side was kind of moving and said we should get with a pediatric neurologist. With Charge I guess it could be cranial nerve issues. I don't what they would do for it. But i do know this issue is becoming much more frequent.

She did make it all day today without a headband over her hearing aid and DID NOT TOUCH IT! Wow! Amazing! Never thought I would see THIS day coming this soon. But tomorrow she could be Little Miss Feisty again...

We are probably up for another nasal endoscopy and most probably tubes in Lily's ears per her Nose ENT. I have to check in with her Ear ENT December 12th. At least the Nose ENT could do both procedures at one time and she would probably just stay overnight at Children's again.

Please keep little Vivian in your thoughts and prayers if you read this as she is having Choanal Atresia Surgery this Wednesday. She looks like Lily's little sister!!

Sitting Pretty!

noreply@blogger.com (Karen Rock) — Thu, 13 Nov 2008 03:11:00 +0000

Lily sat by herself for 4 minutes yesterday with her OT therapist, the fantastic Melissa. She did a few more minutes today with Michele her PT. She really has not wanted to do tummy time. Or sit up unless it's in her high chair or on the couch or in her crib. She has been trying to lift her head and shoulders off of the mattress, changing table and the floor though. I have a feeling if the light ever goes on then we will be in BIG trouble.

I took Lily to the eye doctor today. She said Lily's vision is great considering she has the coloboma. She said she will probably get glasses in a year. She is nearsighted and has astigmatism.

So good news!!

Busy Month

noreply@blogger.com (Karen Rock) — Thu, 30 Oct 2008 20:16:00 +0000

Yes it's been a while since I had something to put out here. I have a fever and Lily has a cold. fairing pretty well but I think I am getting it now and I'm sure Jim will be next. We have a Devil Bliss suction machine, but don't really need anything more than the squeeze bulbs to get the boogers out. All I can say on the topic of her cold is: If you are sick and will be at a similar gathering as Lily, don't go. If you still have to go, then one of us will stay home with Lily and you will not being seeing her. Getting down off the soapbox now...

I had my MRI this past weekend and nothing was found. One less year of worry.

Props out to Hannah --Vivian's Mom -- for an excellent post on "sisters" who GET IT!! Thank you so much for a such a smile/tear inspiring piece.

Wonderful Week

noreply@blogger.com (Karen Rock) — Sat, 04 Oct 2008 01:53:00 +0000

Last Sunday my parents had a party for their 50th Anniversary. They decided to have an openhouse at their townhouse and have it catered. It was a great success. Lily "held court" in their den and got to meet all of my parents friends and relatives she hadn't seen. I think my parents are great people and are lucky to have so many friends. On Monday they are going on a cruise to Hawaii to celebrate. Jim took this series of photos. I just love to watch the way my dad just loves Lily. He is so proud of her.

Today my best friend (yes I know that phrase is, like, soooo high school but she is!!) Kathy took the day off and we went over to Cosley Zoo. They have it all decorated with cornstalks and mini pumpkins and LARGE pumpkins. We saw baby goats that came and kissed me. I think those were Lily's favorite part. I had her wearing a White Sox jersey but she really was not liking it so I put on her Bears hoodie and she was satisfied. We had some cider and I let Lily have a taste. She must have liked it because she kept licking her lips!

Tough Day

noreply@blogger.com (Karen Rock) — Wed, 24 Sep 2008 17:13:00 +0000

I had an encounter with kidney cancer a few years ago and have annual MRIs. So I called in to ny favorite nurse at Northwestern Memorial today. Sandy has been great over the past few years even though I only met her once. I can go to the Galter Pavillion now instead of a satelite location to have my chest xray and MRI now. I had a partial nephrectomy of my right kidney. Dr. Smith was awesome and took off about a third of my kidney and then shaped it up with some spare body fat. I tried to get him to take out some extra at the time but he said he couldn't. I have had some ongoing pain on my left side and I am hoping that it is just saggy post-partum muscles and not anything serious. I will be able to go next week.

On a brighter note, I have been able to get Lily to mimic "Mom" now! She usually says it with her tongue in between her lips. it's funny! She does do it deliberately too but doesn't babble it like she does Dada all the time. She is such a peach!!

Yesterday we spent an hour in my room on our queensize bed and she was squirming all over. She is sooo strong now. I was able to trick her into tummy time multiple times and we just had so much fun.

Boo....Hoo!!!

noreply@blogger.com (Karen Rock) — Sun, 21 Sep 2008 01:37:00 +0000

We drove over to the Naperville Riverwalk and arrived too late to see all the artwork. Maybe early tomorrow? (Yeah, right...on a day with football? Not!) We went to Potbelly for a cheap meal and swung by the Super Target to get some groceries. As is tradition we had to check out the Halloween section. We went by one of those treat bowls that lights up with flashing eyes and a hand pops out to scare you and then quickly disappears. Lily was right there when we pushed the button and when the hand disappeared and the scary music stopped....WAAAAAAH! NOT a happy girl at all...poor kid. We both thought that she would probably laugh. I mean how do you know at that age that one kind of music is scary anyway...Poor Lily. It took quite a while to calm her down. We let her touch some of the fuzzy kid costumes and look at the lighted small Halloween houses and then she was all smiles. Who knew a kid with a coloboma would love lights so much? I think this year we might actually open the door. Last year by the time I got home we had 3 kids stop by total. It runs from about 3pm to 7pm. I might even dress up

First Tooth!!

noreply@blogger.com (Karen Rock) — Tue, 16 Sep 2008 17:36:00 +0000

We have one tooth now in Lily's mouth. FINALLY. She has been very crabby lately. In fact yesterday her DTH thought she may have yet another earache. She actually had her first temper tantrum I have ever seen too. Today she had another. This is not the same girl that did so well in therapy last week. She would not be put in any sitting position at all or roll on her side yesterday or today. i am taking her to the ped today.

But last week she was amazing!! She sat up (or should I say stayed in a sitting position) for Jim and for 1.5 minutes. Her old record was 50 seconds. She is grabbing things so much now..including Jim's White Sox cap. Maybe spending time at Children's (in Cubs territory!) was not such a great idea??

I have been worn out lately and very tired myself. Probably need to eat more vegetables my mother would say!

Progress

noreply@blogger.com (Karen Rock) — Fri, 29 Aug 2008 19:42:00 +0000

Lily in her favorite toy -- her Exersaucer!

You leave for five minutes to work on your blog and then this happens....

I don't have to "set up" these pictures! She's quite good at digging her way through her toys to get where she wants to be!

We had Lily's IFSP last night with her team. We are going to try a sippy cup through speech instead of just a bottle. EI will try and purchase that for us. Also they are going to order a gair trainer along the lines of the one Christian McCants has which is customized. It will be a short little thing! Overall she is coming along very well. We want to get more nutrition into her so we will be going to Easter Seals for that as well as audiology. She was 18 lbs on Monday and now she is 17 lbs 15.5 oz. But they reminded me at the IFSP that heart kids burn alot of calories.

We had a well check today to get all her vaccines up to date. I knew we were a bit behind on those. She was supposed to get 8 but he didn't want them all at once. So we got 5 including MMR. The nurse at Illinois Department of Public Health that has followed Lily since the beginning called just the other day coincidentally. She said she wanted to let me know there had been an outbreak of measles in Dupage County and to make sure Lily gets the vaccine. Well now it's all done. She cried loudly during and right after the shots. I told her "All doone!" about three times and she just shut off the crying. Nurses/doctors are always amazed at that!

She had a earache diagnosed just this Monday and Dr. Liber said it seems to be on it's way out. But Sunday, Monday...what day is this? days and nights have been rather rough for her. Yeah for Tylenol!

Long Days....Night

noreply@blogger.com (Karen Rock) — Wed, 20 Aug 2008 06:47:00 +0000

Today I had barf first thing in the morning from Lily. I was trying to tell Lily this barfing thing (from an overnight feed no less! Never usually happens) was so 6 months ago but she wasn't listening - she fell asleep on the changing table so i strapped her in. That was followed by not being able to find my cell phone (we are landline-less here) to call and put off Lily's OT appointment. So Melissa came anyway to teach me brushing and joint compression therapies. Then Lily woke up and was able to play pretty well with us. She did not mind the therapies at all. I will have to work up to the 4 to 5 times per day she said I should be doing. We have therapy every day but Friday and I am overjoyed thinking about that. Hoping the weather will be beautiful and not so humid so we can go for a walk or to a new park or something fun. I have been inside for 2 days and getting cabin fever.

Sort of off topic...I have found a new sippy cup that I want Lily to get a chance to try. I always worry about bateria building up when I have to take formula everywhere. Especially with the 3 hours until each feed. (She is gtube fed or did I mention that??) The cup is the Foogo Sippy Cup from Thermos. I will give a review at some point after we manage to buy it.

Tonight was pushing past my limits too because Lily screwed up her sleep and her feeds and would not go down. I oped her box from the vendor we get our delivery kits for the pump and they were not the right bags. After a call to them they said that Paul who lived nearby would be stopping by to drop them off along with the backordered MicKey button. Yeah! When he stopped by I was on the phone with unemployment trying to find out where my check was. So frustrating. Needless to say that she went to bed about 10 minutes ago finally and so will I.

This week in Lily's World

noreply@blogger.com (Karen Rock) — Sat, 16 Aug 2008 06:02:00 +0000

Monday we had an appointment at Easter Seals to check how she is hering with her hearing aid. They made a great ear mold for us the last time we were there. Her DVH (Developmental Hearing Therapist) came with and sat in the booth to watch Lily's reactions while the audiologist tried some noises. She did pretty well for a first time (without fluid in her ears or an ear infection), her timpanogram for her ears still is flat so that is still a mystery. I wonder if other Chargers out there have the same issue or if this is just one of Lily's quirks.

We had PT also and she got herself worked up and threw up. After a little recovery time we did some work on the ball and she enjoyed herself. She was a trooper.

She had her vision eval as well. it is really hard to put anything past her. Now I just have to remember to make an appointment with her eye doctor!!

Her IFSP is coming up August 28th. I hope we have all our ducks in a row for it.

Come Fly With Me!

noreply@blogger.com (Karen Rock) — Fri, 01 Aug 2008 23:47:00 +0000

I filmed this with our camera (not the video camera) actually so it is a bit shaky. Too bad I can't edit out my overabundance of baby talk!!