Thirty Five Years

I celebrated my 35th birthday yesterday. My fifth year being a Mommy to this special angel I call Lil' Bil. Well, maybe a little bit more than that, I'm counting her time inside as well as out. ;) . I completed one more page for her first year scrapbook. Stop laughing, I know she is over four and I'm STILL not done, BUT....I'm soooooo close, I have to look through my pics again, but I THINK I only have her first birthday, then it will be done. Two 12 x 12 albums full of the first year of her life. I was maniacal when I first started it, course, back then I had a home nurse. It is AMAZING to look back on those early days. To see how far she has come. One thing I find very strange, I don't even notice her trach and it was hooked up to humidified air for one solid year. I'm just drawn in by those BIG brown eyes of her. You know for most of her first year she laid in her bed? It blows my mind. She only had ONE return hospital stay in that year. I turned 31 shortly after she came home from the NICU. I cannot even remember that day. But today, I held her during church and walked her to the car and shared pop with her at lunch. Can't think of much to top that.

A week of minor frustrations

Ever wonder if anyone is really truly overseeing all the things your special child needs? Me, me, me. Lillian gets therapy twice a week. An ot/pt cotreat on Wednesdays followed by a half hour of speech. She gets an hour of speech on Mondays as well. I've not been thrilled with only having an hour and a half of speech each week bc her needs are so great in that area, but hey I try to have an open mind when therapists make suggestions. Well, this Wednesday, I was greeted by her OT/ST and told they were going to cotreat her bc her PT was out in a conference. Aside from the fact they put on the spot in a waiting room full of people, I agreed, but left dissatisfied. They only did one hour of co-treat and that was it. I feel like I'm caught right in the middle, wondering if she is getting all the care she needs. I love our Pediatrician, but sometimes feel like noone is really overseeing her medical needs. I've have several conversations with four different nurses in the office and still am not totally sure anyone is getting where I'm coming from. I've never been totally thrilled with the cotreat aspect, but I'm a lay person, what do I know? All I do know, when she was in First Steps, the home therapy, she got one hour of OT and one hour of PT every week. Independently. So tell me how getting older would make her less able to tolerate that amount of time? I feel so helpless. I know it will get worked out, but it is just frustrating. She is still coughing quite a bit at night, which has me minorly concerned, but the only thing I can really do is medicate her and hope it doesn't get worse.
At the same time, Madeline is really struggling in school and I'm kind of getting what feels like a brush off there. It has been a trying week.

A new first for Lillian

I think today actually marks the first time Lillian has ever been at attendance to a doctor's appointment that wasn't her own. She would freak out at each new process the girls were going through and when the doctor came in...whoa--- look out! She was in total panic. I kept telling her, "it's not for you, it's for Isabelle and Madeline" that would settle her until the next new person sauntered in. When the nurse brought in Isabelle's shots, I thought she was going to climb inside my clothes...I giggle about it in my mind, but since she's never experienced any other doctor visits but her own, I'm not surprised. I was not at all happy to be taking her along. I hate having her in a waiting room. HELLO germ city and let's not even talk about the toy factor. I'd also like to say, if your child is sick...a. why are you letting them approach and be close to other kids?? b. and if they are healthy but there with you, why are you letting them approach sick kids?? c. how do you politely ask a stranger to get their kid away from your kid you don't want sick? Seriously, is this just a warp of my mind, or don't normal people consider these things. I puke in my throat when I see people in a doctor's office pick their baby toys off the floor and give them back to the baby without even wiping them off...can you say eeeeewwwwwwwwww? Gag, would you let your gum fall on the floor and put it back in your mouth? I think not, but why do people do that with a toy or pacifier that is going straight to their kids' mouths? GAG ME.

Ok, off my soap box. Lillian is still coughing a bit and lost a whole pound in the ordeal but I hope she is on the recovery. Her right ear has continued to bleed off and on. Her 3T's were just starting to stay on sort of and now I am having to pin all of them. Does anyone else with chromo kids have problems with feedings such as volume and speed issues. I can't seem to push her beyond the point of 150 mls over and hour. I can't increase her total, nor can I speed her up, no matter how much I try. Wonder if this will be something we will always have to deal with. *sighs*

It is a rainy, cold, dreary day and my attitude is matching for the moment.

A Few Words

I hope when you read this blog, you realize I come here to laugh and share. I come here for support and comfort. I come here to vent and steam. I come here to perhaps say things I wouldn't necessarily say aloud or say to someone in person. Hopefully, there is a little light I'm shining for special needs children, hopefully, I'm conveying God's love and mercy.

A new day?

It was an early appointment at the children's hospital. We had to be there by 645am. Amazingly I was able to go to sleep around 1030pm last night, so the early morning wasn't terribly dreadful, not to mention I did not feel like daggers were stabbing my eyes, I hate that. We arrived and were moved right along, sadly, she is a familiar face to the OR and everyone is always tickled to see her. The short story, the removed old t tubes and put in new...different shaped t tubes. She described them to be shaped like the collars they put on cats and dogs to keep them from biting themselves...she stated that Lillian's right ear began bleeding out upon removal of the tube, which is highly unusual..(go figure, not MY daughter)...she had to afrin-ize her ear to stop the bleeding. She wondered if perhaps she pulled out a polyp or granulation tissue, bc bleeding should not have been an issue.

The interesting part of the day? Her post op nurse entered the room and got report from OR nurse and looked Lillian over (she was totally zonked, hello versed and fentanyl..Lillian, not the nurse..tee hee) she turned to me and said, I have a daughter with pierre robin syndrome. We talked quite a bit. Turns out, her daughter is now 20 and had very similar issues as Lillian. Her daughter didn't suffer the severity of Lillian's issues, but so much was a like it was crazy. It felt so good to talk to someone who had been through so much of a like journey and was seeming to be on the other side of it. Her daughter had a different chromosome anomaly, but much the same symptoms as Lil Bil. She kept telling me how much Lillian reminded her of her daughter. Her daughter has to work really hard in school but is in college and doing very well. She said her daughter did not speak until she was five years old and had a pharyngeal flap put in and came out of the OR talking...HELLOOO...TALKING.

I have to tell you, I have never lost hope for the life Lillian will lead, but I've certainly felt helpless. I sometimes feel like we are in a dark tunnel and today I saw a light and felt a small twinge of relief and a little bit of wow. I have "met" many SN mamas through the webiverse, but seeing and talking to a someone in person who not only has a SN baby, but has had a journey so similar to your own is so unbelievable... very hard to put into words. She was SO encouraging to talk to.
God is ALWAYS providing...sending the people you need when you need it...

Today was surreal to me. Praise God from whom ALL blessings flow.

Hmmm

I wondered if my poor baby was EVER going to get any rest last night. She hacked and coughed and hacked and coughed and sneezed and hacked..and well, you get the picture, for hours afters she fell asleep. I was up constantly checking to make sure there were no bloody noses, since that is what I keep finding after these episodes...and when she is still asleep in the mornings so quiet, I rush in there with the slightest feeling of panic thinking the worse. The last several days has been very miserable for her. We are still not able to get her up to full strength feeds...she has missed school and all therapy for a week now. Tomorrow she is supposed to go back to surgery and I'm starting to worry they won't take her in if she still has a fever, EVEN though the whole reason for it is the ears. It has been a LONG time since we've had this kind of feeding intolerance and it disturbs me...but what can we do. I'm praying, just continuing to pray...

Ears ears ears ears ears ears ears ears ears ears ears

Anyone have a guess what this post is about?

Here is a phrase I grow very weary of hearing..."at least it's JUST an ear infection"

This is what an ear infection means for Lillian:

No nutrition, as she becomes a vomit volcano
Raging high fevers that cause febrile seizure
Vomiting 1/4 to half cups of snot no exaggeration
Sleep deprivation
Coughing to the point of bloody nose
General grumpiness and discomfort.

I'll spare you the details of the last two days, beyond the above, she is going back to surgery Monday or Tuesday to replace current T tubes and suction of ear canals.

But.....at least it's JUST an ear infection.

We are still here

Just without a computer. This is the first time I've actually had time to come to the library and try to get a post up. Lillian is doing so well. She is happy and active. Problems continue with her ears...she continues to have ruptures even with tubes in. For her, a simple ear infection is a BIG deal. It causes her to have lightning high fevers at 104 and feeding intolerance and general discomfort. She is not the most stable walker in the world, so throw in some in ear problems and that really throws the sweet little baby for a loop. Other than slamming into a wall and splitting her head open...and being sick from nasty ears, she is doing well. I did place her into the prek special needs classroom and today at PT conferences I was relieved to hear how well she is doing. She transitioned wonderfully to the classroom and other 6 students and is loving it according to her teachers. She is astounding her speech therapist with her knowledge of testing she is giving her, which makes me feel so good. Due to car problems, I also had to put her on the school bus. This is a normal school bus outfitted for handicapped children and she only rides with kids in her class. It takes them longer to strap her in the seat then it actually takes them to drive to school from our house. (side note, we moved ,yet again, into town hopefully to never move again.) She seems to LOVE riding the bus.

We also had another genetic test done with doctors from KY. It came back with the same chromosome anomaly, but showed that she has a mosaic form of it. I would love to explain that, but I barely understood it myself. Have not even had a chance to google it. She also had another swallow study and video testing to see if she would be a candidate for and adenoidectomy to help with her ear and allergy issues. Unfortunately, she is not. The problems existing in her palate that hinder her speech would only further be exacerbated by removing her adenoids. It is like a vicious little circle...she can't speak bc there is too much space back there, she has very low tone in her mouth which hinders her speech and eating abilities. She is not old enough for further testing or prosthetic devices to help with all this. Not to mention, her poor ears constantly rupturing, which I'm sure inhibits hearing properly....follow that circle??? My heart has been so heavy bc I've longed to be able to talk with her and understand what she wants when she is trying to tell me something. I tell myself I should be accustomed to this road of ups and downs, but I never am. I just keep praying. I wish I could write more, but I have no desire to to have a break down in the library in a room full of strangers.

We are still waiting for results on her allergy testing and I'm sure we will be headed to the OR soon for new tubes.

Hopefully my computer will be back home soon, and I can get some pictures posted. Miss you all!