March 12, 2001

Since Brook's second birthday (June 11, 2000) she has had two bad cases of pneumonia.  From her second birthday until late October she was doing very well.  Eating well (still strained baby foods), talking, cheerful, etc...  Her movement was still good.  She could move her arms, even turn from her back to her side, sometimes-even roll to her stomach!  She sat in her carrier and car seat in a reclined position.  She loved to be held.  She could move her legs while laying on her back and wiggle her feet.  Of course she could still not hold her head up nor sit up.  She was a totally floppy baby.

The latter part of October she came down with a bad cold, which led to pneumonia.  In fact, double pneumonia!  Naturally she ended up in the hospital PICU on oxygen, feeding tube in nose, IV's, etc.  After several days the doctors gave up on her and advised us to withdraw some of the support, as it didn't seem to be helping.  We were ready to go talk to the funeral director to make arrangements.  All the equipment was removed from her on Friday afternoon.  That evening she started talking to us some.   By Saturday morning her fever was gone, she even asked for her bottle!!  Family, friends, churches all over the country, including all you SMA families, were praying for "Little Brooke Leigh".  God worked a miracle and when the doctors gave up, He took over and decided to leave Brooke here with us!  How blessed we are!  And how thankful!  When we left the hospital that time we were referred to hospice care and have had that ever since she left the hospital.

Brooke's condition after this awful bout with double pneumonia left her in a weakened condition, she no longer could roll over, her legs and feet did not seem to move.  Her arms and hands still moved but seemed weaker.  She did not want to eat anything!  She would not even attempt to eat the strained baby foods she had once eaten so well.  All she would do is suck her bottle.  But her swallowing was also affected and it was a slow process to get a few ounces down her.  She had lost only a couple of pounds while ill, but was certainly not going to regain them at this rate!  She continued to recover and seemed to be very content and happy in the condition she was in.  Hospice came (and comes) at least twice a week.  Her vitals were good and everyone seemed happy with her progress.  She had a great Thanksgiving and Christmas holiday with all our family.  Then a few days after Christmas she came down with a cold again!  Of course, pneumonia again!  Only in one lung this time.  The doctor said there was no use hospitalizing her as we could care for her at home.  Plus the hospitals were full at this time with all the flu cases going around.

We have all the equipment and hospice.  Brooke of course was much happier at home.  This lasted about 10 days, with me thinking every day "she is not going to make it this time, she is too thin and already so weakened by the last time this happened"-but amazingly she recovered!  That was mid-January, about two weeks after she began to feel good again, one evening she said to us "I want some dinner".  We were eating spaghetti at the time.  Her mom immediately mashed some up, gave Brooke a bite, and what do you know, she said "Ummm, umm, that's good!" and ate several bites!  Since that time she has been eating table food-soups, cake, just about anything she wants that she can swallow.  Of course in small bites and mashed up, but she is eating naturally!

At this time she has regained much of the strength she had before the illness in October!  She can not roll over, but she is moving her arms and using her hands better.  She is beginning to move her legs and feet again!!  She has also gained a couple of pounds back!  God is so good-every time we think we are losing the battle-He shows us His strength through Brooke.

This should fill you in for the past year.  We are looking forward to her 3rd birthday in June, and hey-we feel certain she will make it-she is determined and such a fighter.  I plan to be sending her 3rd year birthday pictures this summer!

October 26, 1999

Well...here I am again with an update on what's been happening with me since I turned 1-year-old back on June 11th.  As you see in these photos, I had a great birthday party and was feeling great.  The weekend after my birthday I attended a family reunion with my grandparents.  My mom couldn't go because she had to work.  The day of the reunion I began to get a little cold.   By the time we got back home the next day I had a bad cold.  Mommy took me to the doctor and she gave me some antibiotics and other medicine-but by the end of the week I was worse and my family rushed me to Children's hospital.  Before I got there I almost stopped breathing.  As soon as we arrived they were waiting for me in emergency.  I was stuck, poked, covered with cool rags, hooked to machines, etc.   It was very frightening to my family and to me!  They now knew I had pneumonia and a collapsed lung.  I wasn't expected to live.  But they got things sort of under control and I was sent to PICU.  After a couple days I was sent by ambulance to another hospital closer to home and remained in PICU for several days.  I came back home after about 10 days in the hospital, but you know, I really wasn't as well as I should have been because in 4 more days I was almost as sick as before.  Another fast trip to emergency...another 10 days in PICU...again not expected to make it through this time...But you know people all over this country were praying for me.  My grandmother let all of the SMA folks on the guestbook know about my condition and asked for prayers.   And the Lord just decided He wanted to leave me here a while longer!  Thanks for all the prayers!

Now I am 16 months old and doing really well may I say.   No more colds.  But now my folks keep me in more and away from crowds, like at the mall where I loved to go.  I can't go to Sunday School anymore because there is always some little kid there with a cold.  I loved Sunday School!

By the way, when I was so very ill this summer, my mommy quit her job to stay home with me so my pop-pop could work some at the farm.  Me and mommy have a great time together.  She is teaching me my numbers and other things I need to learn.  I am talking up a storm now too.  I love to talk!  The doctors had said I'd never talk, but guess what, they don't know everything!  I have quite a vocabulary and you better be careful what you say around me because I love to repeat it!

Hope you like my pictures.  I'll keep in touch!

February 22, 2000

Hello everybody!

Hope you enjoy the up-to-date pictures!

Well, here it is the year 2000!  Brooke is now 20 months old and nearing her second birthday on June 11th.  She weighs 19 pounds and is 31 inches long (TALL!!)

We Have Great News!  Since Brooke's last bout with pneumonia back in November 1999, she has been cold-free and doing great!  No oxygen-no feeding tubes-nothing at all for external help!  She has been taking the RSV shots once a month since November.  We have been keeping her inside the house so as to keep her away from contacting any viruses when around lots of other kids or adults.  She is talking up a storm!  Her vocabulary is increasing daily!  Her strength is remaining about the same.  No new weaknesses.

Brook recently (January) had her semi-annual clinic visit at Children's Hospital and was given a good report-so good in fact they said that unless she becomes ill, don't come back for 1 year!

General Condition At This Time:  No head control at all-can move her legs and feet, arms and hands.  Her arms very well-with her hands she can grasp light weight toys.  Her absolute favorite place is to lie on the carpet stretched out.  If you put her left leg over her right leg she can sort of roll over enough to pick up and play with her little toys.  Once that leg crosses back flat on floor and she gets on her back, she cannot get back on her side without assistance.  That is about the extent of her movement.  Last night she did roll herself almost on her stomach!  She said "Watch this Pop" and she did it!  She can count to 10, knows her colors, loves for you to read books to her, and knows her animals and sounds they make.  She really loves for her Aunt Donna to read the Bible to her.  And her absolute favorite videos are Veggie Tales!  Her favorite place to go other than Sunday School is her "pop's" farm to see all the animals.

Feeding:  She only eats strained baby foods.  Her swallowing is not good if food is chunky.  She can eat some table foods like rice and gravy.  But mainly it is the strained foods.  She drinks milk mixed with rice cereal from a bottle.  She loves ice cream.  She is on zantac and propulsive medication.

Sleeping:  She sleeps great!  Goes to bed around 10 p.m. and sleeps till around 8 a.m.  She does wake in the night and need to be turned to her side, but remains sleeping.  She sleeps with her mom.  She takes about an hour nap once a day. 

Brooke has a Kid Kart, but she really doesn't do well in any upright position.  She'd rather lie flat out than be reclined for any length of time.  It seems when she is held by someone or even reclined in her infant seat, it becomes hard for her to breathe as well as she can lying flat.  She is always saying, "Lay on the carpet, lay on the carpet!"  The most difficult thing we are working with is a car seat!  She is still riding in the rear facing infant seat but is getting a little long for that.  We plan on a trip to Virginia in July if Brooke is still doing this well.  Hopefully we will have a better way to travel by then!

We will look forward to updating again after Brooke's second birthday and our trip to Virginia!

Love to all,

Pam Pam (Brooke's Grandmother).