Christmas 2008

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

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

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?

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!

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

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

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

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!!!

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!!

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

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

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

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!

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!!

More Photos!!

She loves hoodies, sun hats and has officially inherited the remote from Mommy..yes MOMMY..NOT Daddy:)!

Cutest baby in the WORLD!!

Calendars

Trying to keep Lily's schedule straight again with all her therapy is kind of making me crazy. Speech, PT, OT, DTH, DTV, dr.'s appointments...It's not like I haven't dealt with it before when she first came home from the hospital. It is just taking a bit of getting used to again I guess. I am so lucky to be able to spend this time with her. I hope I can end up spending this time with her for a while. We have a great team for her and her next IFSP is coming up on August 28th. We can order a walker for her then and start down that road.

I have to set up an appointment with Dr. Young ENT who specializes in cochlear implant surgery and see if Lily would be eligible. Her cochlea are malformed so they don't always do that. There is a group that meets monthly at Comer's (University of Chicago) and they will be reconvening after the summer in Spetember. I would like to see what our other options re: doctors are for this issue. At least there are some options since we are so close to Chicago!!

This whole journey is complicated. You have one map and then the signs don't match and so you get a map for that area and then another...it's a long road of tangents. I think the first stop was lining up Lily's doctors, then her therapy. I think that having those figured out are part of this journey. Dr. Dana Suskind at Comer's may be another. We shall see!!

Who's On...

First blog! Woo hoo! I was finally inspired to do this by Hannah from California (Viv's mom). It is what it is. But I think this could seriously be an outlet I could use right now.

Last week on 7/16 I became one of the officially unemployed. Yes, it my 3rd layoff after my 4th merger. We'll see how this goes. The best part of it is that I get to be with Lily again for all of her therapy and doctor's appointments, etc. She is a morning baby and I am not a morning mommy at all. I'm sure God decided on that!

Today we took Lily to Cosley Zoo in Wheaton. She saw some sheep a horse a goat and then the backs of her eyelids. I am still getting used to her sleep schedule. Right now it is defined as one nap in the morning and one in the afternoon. When specifically is up to her... I can thank Children's Memorial in Chicago and the great nurses there for her self-soothing tendencies. She could play in her crib all day without one peep. She is quite a scoocher (not sure if that is a word) and lays on her back and pushes with her feet to get around.

As I mentioned, Lily has Charge Syndrome. She was part of a genetic study when she arrived at Children's. She has 4 heart surgeries, 1 choanal atresia surgery, 5 nasal endoscopies, 2 cardiac caths, gt tube surgery and a partridge in a pear tree...She has a retinal coloboma in her left eye; heart issues (Double Outlet Right Ventricle with aortic stenosis and Ventricular Septal Defect with coarctation -- whew!!); ear issues (severe hearling loss in the left ear and mild to moderate in the right) and is gtube fed.

Ok. More than you wanted to know. I never in a MILLION years thought I would know this much medical terminology in my life. And yes now I can sound like a nurse. Halloween is only a few months away. Lily could be the doctor! Back to topic...If you are one of my friends you know I could go on and on. And I think I will do it another day because I have held myself back from running into the other room to go play with my daughter!