2003 Excitement!
(last updated March 11th, 2005)
MEDICAL NEWS:Yea!! Lillian got her G-button out on July 16th, 2003! Read the story below (7/17/03) and check out the pictures. (Don’t worry – they are not too gory!!)
Pics of Lillian's button being removed!
FOOD:
10/13/03:
Lillian is really enjoying her food these
days. As you can see from the picture to the left, she gets to eat
pretty much the same stuff that we do, including chocolate chip
cookies. She is still on Pediasure for her milk. At our 18
month check-up, Lillian had grown enough to make it "back onto the
chart!" Kids' weight and height are charted each time they go
in. For Lillian, both her height and weight had fallen to below the
chart at 15 months. At 18 months she's back up to the 15
percentile. To give you an example, Emma stays around 50-75% and
Cora is consistently below 5%. Lillian had
gone from 20% to below 1%. This is why everyone was so concerned about her weight gain. Obviously, she is getting good nourishment now! Isn't God great? She still isn't swallowing perfectly, but she's as close as she has ever been. She should be receiving Speech therapy from ECI but the speech therapist hasn't connected with me for some reason. Our insurance does not cover speech therapy, so we need to go ahead with ECI. We do have a social worker/developmental specialist who is coming once a month from ECI to play with Lil and help augment her other therapies. Pray that she gets in contact with the speech therapist about starting oro-motor therapy to improve her swallowing.
7/17/03: After much work and excitement, the day
finally arrived (yesterday) and Lillian got her button out!!! Yea
for Lillian! She was weighed on
Monday and was 20lbs. 6oz (for those on the metric system, she gained 1kg in 6
weeks!). Dr. Olive said it was
definitely okay to pull out the tube (as long as that weight gain was only from
regular feeds, not any tube feeding). So last night at around 8pm I deflated
the balloon in her tummy (it’s not really very big) and I actually tried to get
her to pull it out, but it kind of irritated her. So I did it! By
the time I changed her diaper and put her pjs on at 10:30, her little stomach
hole was closed up. It is like
when you get your ears pierced and forget to put your earrings in and your
holes close up very quickly. This
morning when I took the band-aid off, it was completely closed. She is still eating Pediasure, but
please pray for us to be giving her the right amount. She is still drinking from a bottle, and because her
teething is pretty painful, she hasn’t been drinking as much as we think she
should. Also pray that she learns
how to drink from a cup soon. That
doesn’t bother her, but she doesn’t get a good lip seal. So only about 3/4 gets down her (which
at this point is great!) We will
start speech therapy with ECI (Early Childhood Intervention – a state funded
program to provide services for children who qualify like Lillian). So her therapist will work on all of
that cup stuff and more swallowing and chewing exercises. I’m looking forward to Lillian
improving her eating also. Keep
praying – we can really feel every prayer! Thanks for all of your support!
6/9/03: Well, we have had an interesting 4 weeks. Starting May 7th, we took Lillian off of all tube feedings. We switched her to whole milk from formula. She did not tolerate it very well at all. So we switched her to soy milk. We also kept up the baby food. After 4 weeks (last week), we took her back to Dr. Olive’s nurse for a weight check. Unfortunately, she had actually lost weight. (If you are one of the fortunate people to see her consistently, you were probably very surprised at this news. She looks great!). Dr.Olive told me to start her late night tube feeding again. I actually refused to do this right away. That first night, we did wake her up around 9pm, and fed her another 3 ounces. The next morning, I took her to her 15 month appointment with her pediatrician, Dr. Zietz. After weighing her and measuring her, he also came to the conclusion that she just is not getting enough calories. I asked what recourse we had other than tube feeding her. Her looked at me and said, “ I know you. You aren’t going to tube feed her.” And then he proceeded to tell me about supplementing with yogurt and to continue to feed her a night bottle. I called Dr. Olive’s nurse and asked about adding calories to her soy milk. She just needs more calories. Dr. Olive came up with two options: We can add ‘Polycose’ (Joe Weider’s for babies) to her soy milk OR we could switch her to Pediasure. We chose the more expensive option (of course) and switched her to Pediasure. She now gets a bit more calories than she would get if she were on whole milk. I will probably take her in to get her weighed in one or two more weeks. We are paying very close attention to her height. That is the tell-tale number. It will show that she is getting enough nutrition. Pray for her continued growth!
5/1/03:
Lillian is doing great! She is swallowing fairly well now. She had her third swallow test at the end of March and did well. She showed only a low risk of aspiration while drinking regular formula consistency. She then ate baby food and did that without any problem at all. She did show a bit of trouble when trying to drink thickened liquid through the bottle, but with minimal aspiration. So, we have since started her on solid baby food. YEA! She likes oatmeal cereal and rice cereal and applesauce. She kind of likes green beans and peas, but I think the jury is still out on the green stuff! We go to see Dr. Olive (GI doctor) on May 7th to find out where to go next. We are also waiting to hear from a speech pathologist to begin speech therapy with an emphasis on oro-motor skills. She (or he) will work with Lil to get her tongue and mouth to work properly when eating. We still use the feeding tube (G button) at night if she is sleeping during her last nighttime feeding.MOTOR SKILLS
:10/13/03:Lillian's motor skills are still improving. She is getting around very well, either by crawling on her tummy or by scooting on her bottom. She still rolls a bit, but we are trying to encourage her to crawl exclusively. She, like any child, needs some time to practice. I don't mind her not walking yet. I am particularly glad she cannot climb stairs yet. I'm not in a real rush to put a gate up at the stairs! Anyway, she had developmental testing done at 19 months and had a delayed score on her motor skills because of her not walking yet. That was fine by us. She still plays very well with toys and pushes buttons and feeds herself foods, etc.
7/17/03: Yea! Lillian sits up very well. She is starting to sit up on her own, but still needs practice with this. I still think her motivation isn’t great enough. She can roll every where she wants to go (and where I don’t want her to go!), so why should she sit back up once she is down? Anyway, she is definitely progressing for the better!
6/9/03: Lillian continues on her sitting and balance. She needs to learn how to get from a laying down position to sitting. Yesterday, she did go from a partial layind down to a sitting position. I just need to put her in that half-sitting/half squatting position more often. (I really think when she wants to do it, she will. That has been her consistent pattern). She also picks cheerios up with her hand and eats them. It’s pretty cool to watch her do this. It is good fine motor skill practice.
5/1/03:
Lillian is still slowly learning how to sit up. She is doing it for much longer lengths of time now. We still use something to prop her up to begin with. She does roll from one side of the house to the other in seconds flat, so I'm not sure how motivated she is to actually learn to crawl or sit up or even walk. She is doing well with physical therapy once a week and occupational therapy once a week. She does her exercises and plays very nicely as long as there are other children to watch. She is so used to this at home,it helps therapy also.MENTALLY:
10/13/03:Last week Lillian had a neat doctor experience. We have not really talked about the fact that at twelve months Lillian was diagnosed with Cerebral Palsy. Our current neonatologist, Dr. Bradt, at Hermann explained to us the whole process of diagnosing a child with Cerebral Palsy. They have to meet two of three criteria to actually be diagnosed with the condition. The three criteria are: hypertone or hypotone (high or low tone), not walking yet, and non-responsive reflexes. At twelve months (and actually at 19 months also), Lillian did meet two of those three criteria-not walking and low tone. Her reflexes are fine. The doctor explained that the medical community has expanded these criteria to include children within the whole spectrum of brain injuries. This way, the child can receive more help with this label, through insurance or other resources. I believe that we did not go around telling everyone about this diagnosis because we really believe that Lillian was healed by God from the beginning, and this label stated that she was a flawed baby. (Everyone knows that we believe that we are all flawed, but Jesus can take care of that if you want Him to. That's another issue!) So, we were just going along with the doctors with the diagnosis, yet in our hearts we knew that Lillian seemed (and is) as normal as Cora, Quent, and Emma. Well, last week, Dr. Bradt checked her out and told us basically that she had improved so much in the last 7 months. She said it was rare for her (Dr. Bradt) to be able to say this, but she really believed that when Lillian is three or four she will have outgrown her CP diagnosis. Her little brain has basically recircuited itself, and her tone is almost normal. If she continues improving at the rate she has in the last 7 months, she will be normal at age 3 or 4. This statement at first perplexed us, because we thought that once you had CP, you had it forever, but the doctor confirmed that you have to meet the criteria for it. And at this pace, Lillian will not meet the criteria for it later! I thought, "How wonderful for someone in the medical community to confirm what we all really had faith for and believed 19 months ago!!" I still have to schedule a neurology appointment along with an MRI. I did state earlier it was part of the blanket study (the MRI) but found out last week that it is separate. So, I'll keep you posted about that. Thanks so much for your prayers and support. We still have to get down that road, but with a smarty like Lil, it's a fun road to walk down! By the way, if you get a chance, be sure to have her sing "Jesus Loves Me" in sign language. She is singing and talking up a storm.
7/17/03: We are so excited about Lil’s progress. We wanted everyone who came to the concert top really see how wonderfully she was doing. So before the second half, Donnie brought her up on stage and asked her to say some things to the audience. She whispered “Wow!” likes she does quite often at home, and then she said “Thank you,” after Donnie asked her to. Then Donnie asked her to wave bye bye, and Lillian grabbed the mic with both hands and proceeded to talk in her baby gibberish (which is the coolest!). She would not let go of the mic! Sounds like a very intelligent Keller child to me!! She will at 18 months get another MRI as part of the blanket study. Be praying for the doctors to realize what a miracle Lillian really is.
6/9/03: These last four weeks have shown Lillian to really start responding to some of our requests. She waves night-night; she can tell you where it says LILLIAN (next to her on the changing table wall); her favorite word is ‘cow’ – she says it with a ‘t’ instead of a ‘c’; she also today said “all gone” in sign language! She meant “all done” because the cereal was not all gone! She is just so cool to watch and talk to!!
5/1/03: Lillian is participating in a study about the cooling blanket she was on during her first 72 hours after birth. Every six months, she goes into the High Risk Infant Clinic at Memorial Hermann Professional Building and goes through a battery of testing. At twelve months, she did very well mentally and was only slightly delayed in her motor skills. The psychologist said she was at twelve months mentally and looked fantastic. She is repeating sounds back to us and follows us with her eyes when we are talking to her. She just started giggling (thanks to her siblings!) and is just a delight to talk to. She does have her own opinions. For example, if she is hungry, she does not hesitate to let you know!! (We always remember how she did not make a peep for the first four weeks of her life! Hard for us to imagine that time when she's screeching for her morning bottle!!)IN GENERAL:
Lillian was a sheep in the Christmas program,
December 14th, 2003 at Grace Covenant Church.
A Benefit Concert for Lillian! Click on the link to check out our TOTAL we have since received from our benefit concert and how we are using the money!