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UPDATE: 11-13-06
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Aaliyah's Obiturary
Aaliyah went to be with Jesus today at 12:45. Please keep her family in prayers. I don't have any other info at this time.
10AM
Sue just called to say that Aaliyah has been air-lifted to the hospital with pnuemonia. Please get prays ascending for this little one. I will update as soon as I know more....God Bless, Elizabeth
UPDATE: 6-23-06
took aaliyah in yesterday for a chest xray and the doc rxed an antibiotic. i just didn't like how her lungs sounded and prayed it wasn't pneumonia. God answered and she has bronchitis but required oxygen continually all this past week just to keep her sats up. she was feeling a little better last night so now i pray she feels even better today with the antiobiotic kicking in.
a PRAISE is that aaliyah now has a new nurse 40 hours a week and also the director of clinical services came out and assessed 4 of our other children and is submitting for nursing for them also and also physical therapy. i don't know how to act now that He is sending additional help so our little ones may reach their fullest individual potential.
another Praise is we pick up our "new to us" bus with tie downs for the wheelchairs today. it is ready. kids are all excited and can't wait to go for a ride. this bus will enable us to travel even to walmart's as a family (6 of our kiddos have wheelchairs).
life just keeps happening here one minute at a time. we serve an Awesome Father and Son. Thanks for all the prayers for our family. sue
UPDATE: 3-28-06
she has her follow up appt. tomorrow with the surgeon that believed in her (originally he refused to do a trach-after she didn't die) and placed the medport and trach. it has been 3 weeks ago already. Praise Him the Great Physician. also received a call from Make A Wish foundation re: a wish for aaliyah. trying to think of a wish involving riding in cars and water that would be a dream come true for aaliyah. her loves in life. He is watching over her every minute. sue
just got a call and aaliyah has qualified for home nursing. she will have a nurse 40 hours a week from 8am to 8pm. oh what a blessing this is going to be. God is so good. sue
UPDATE: 3-17-06
Aaliyah had a pediatrician's appt. earlier this week and the ped came in and said, "well ms. aaliyah so happy to see you i didn't think i would ever see you again." (this is the same pediatrician that last month sent her home with comfort care. aaliyah has opened more professionals eyes to the fact He is The Great Physician. All praise and glory to Him.
Also our little kim has her next appointment with an oral surgeon that is part of the cranio facial team that will perform her next procedure on April 3rd. we will know more then when the next surgery will be done. Kim's trach is out and she has requested it not be put back in (she only needed it for the surgical procedures) so she is a much happier little girl. first time in 9 years she has lived without a trach.
blessings and prayers to all sue
I request prayers for a very special little 3 year old dx. with cancer? (leukemia)she was intubated and transferred from the hospital aaliyah was in to Univ. of Mich. and the docs are only giving the parents a 5% chance of her survival. Sonja needs a miracl and all the prayers she can get now. thank you so much. His love and mine. sue
UPDATE: 3-16-06
Aaliyah went to her ped last night for a follow up from her last hospital visit. she was greeted by the ped with "well Ms. Aaliyah i am so happy to see you again as i didn't think i would. (note: this is the ped that sent her home with comfort care last month). aaliyah looked up and smiled at the ped and made my whole day. *S*
she checked out great and the doc gave me her needed rx. and refills and we were on our way.
(side note dad was also checked as he has a swollen lymph node under his arm) doc put him on antibiotics for 10 days to see if "it goes away". i pray it does as we don't need any more excitement in our lives. thanks to all for the thoughts and prayers for our aaliyah and family. He is Good. sue
UPDATE: 3-12-06
UPDATE: 3-7-06
PRAISE HIM
we just got home from the hospital about an hour and a half ago and when the EMT's laid aaliyah in her bed she looked around and smiled. she now has a med port and a trach and is on NO oxygen and her saturations are 99-100 % we do have stand by oxygen for the sleep apnea and seizures BUT while in the hospital she only desatted to 88%. here is a pic of the little girl i found when i went back up to the hospital after she "died". the entire hospital are still in awe with the miracle of aaliyah. thank you all for all your love, thoughts and prayers. we serve one Awesome Father. sue
UPDATE: 3-1-06
thank you all for ALL the prayers that have gone up to our Lord. i received the call about 12:43 am to let me know the time of aaliyah's actual death and i was shocked as our Lord has left her on this earth as she hasn't taught all the lessons he had for her to teach yet. she did NOT die. they took her from the OR and transplant team back to her room and resumed treating her as a living baby. i am just sitting here is awe trying to figure out God's plan as all the plans i have been making are NOT His plan. at this moment i don't know what the doctors plans are but i am sure i will know more today. again thank you all and i am still sitting here in amazement of His love. sue
UPDATE: 2-28-06
9:20PM
our precious baby girl is going home. i just got the call and they are keeping her alive until she goes into the OR at 10pm tonight (MI time) as they have recipients for both of her kidneys. God has been so good and gracious and His plan is so beautiful. i will let all know when the arrangements are finalized. Aaliyah Michelle Tolin
10-29-03 to 2-28-06 sue and family
tonight i am home from the hospital but our precious aaliyah is still there. today has shown me that God is calling her and i leaned over her and kissed her and gave her permission to go Home. they are planning to take her off the vent tomorrow morning and if God calls her home the transplant team will all be assembled to harvest any and all organs that they can use. if it is God's will she is to stay on earth a little longer they will put hospice in place. the plan right now is she is in Hurley Hospital in PICU with the most caring, loving and dedicated staff i could ever ask for. she is NOT alone and won't ever be. aaliyah's little body is very tired and my prayer is that God takes her home where she can join her brothers quickly and peacefully and our memories of her smile, "telling stories" will keep her with us forever. tomorrow i will try to find a funeral home and figure out how we will be able to do a funeral for such a special angel of His. thank you all that have kept our baby girl and family so close in your thoughts and prayers. sue
UPDATE: 2-23-06
Aaliyah was just taken via EMS back to the hospital with respiratory arrest. they intubated and vented her and are transferring her back to Hurley Hospital in Flint. i am at home right now. thanks for keeping our little angel in your prayers. sue
UPDATE: 2-21-06
update as far as aaliyah. didn't take her into the pediatrician last night as she was resting comfortably and didn't want to move her and take her out. i talked with the neurologist yesterday and he changed her seizure meds and she is no longer seizing. my prayer is we can get a trach in her for a permanent airway (nobody up here wants to do it). all up here just want a DNR and hospice. i have an appt. on march 7th downstate for this.
PLEASE keep her on the ongoing prayers list. i am exhausted but looking to the Lord for my strength. love, sue
UPDATE: 2-20-06
February 20, 2006 12:16 PM
right now aaliyah is doing awesome. using a pacifier in her mouth to keep her airway open and she needs a permanent airway but all up here feel she isn't worth it and won't do it...i should do a DNR per them. she has an appt. on March 7th for the ENT and she can do an emergency trach that day. also called the neurologist and they are calling in some ativan to give her if she siezures more. she is now on continuous oxygen for bronchial pulmonary dysplasia but doing wonderfully as far as oxygen saturations go. i am the blessed one for He is allowing me some more time with His precious baby. love, sue
February 20, 2006 8:56 AM
well the little stinker had an awesome night her sats high and heart rate low....no temp.....slept like a baby and was snoring to beat the band. God isn't ready for her yet. sue
10:30PM 2-19th:
Please cover aaliyah in prayers. she just had some major seizure activity and her heart rate went from 167 to 46 and all in between. i just gave her some diastat and also some extra phenobarb and she has stopped seizing for the moment. her temp was up to 101 and i am sure her little body is shutting down. i am not taking her to the hospital right now. i did call her pediatrician and going to see what the night brings. please keep her and our family in your prayers. God's love and mine. Sue
UPDATE: 2-15-06
aaliyah is home, resting comfortably in her bed and i am certain thinking, "ha ha and all you docs thought you were God"
when she coded we were transferred to a little larger hospital. on tuesday night as they were weaning her from the vent she had a seizure. now she needed a neurosurgeon. when "their" neurosurgeon walked in i informed him he could turn around and walk out as she HAS her own neurosurgeon. they stopped the weaning of the intubation and left it intact with the vent as they knew she was headed for surgery. they did a body xray to the abdominal tube from her VP shunt was in a knot. she was transferred down to Children's and had shunt surgery yesterday morning. when our neuro surg came out of surgery she explained that the shunt itself was fine BUT scar tissue had grown all around the tubing. she removed the scar tissue, shortened the tubing and aaliyah was extubated last night at 6pm and by 6:15 pm she had a full smile and i can just imagine if she could talk what she would have said.
this time around i had many, many more informing me of DNR's-asking me WHICH one i was signing for her, asking me "how long has she been retarded", what she can do and how long should they let her live....ummmmm one problem it IS NOT up to them. i took her to the ronald mcdonald house at 8:30 this am fully discharged and waited for my daughter to come pick us up. free at last YES aaliyah is free from the hospital again. *S*
she has an appt. in about 3 weeks for a trach as the two episodes of respiratory arrest and then the full code had ALL occurred due to an obstructed airway..first her tonsils then her tongue to the back of her throat during seizure activity. SO sorry so long but i am now going to try and read the 955 emails on my computer.
while waiting for the doc in surgical waiting area i did see and talk with kim's cranio facial doctor and she has the new plan. i just have to call the office and the next procedure will be scheduled.
sending prayers to all in need and thanking all that kept aaliyah in their prayers. tomorrow is another day. Sue
UPDATE: 2-14-06
mom called earlier today with an update. aaliyah does have pneumonia. she's also had a shunt malfunction. they are tryin to wean her off of the vent. she suffered a seizure last night. she has been transferred from Hurley to Children's now. where tomorrow am she will undergo a shunt revision.
will keep y'all updated as soon as i get any news.
wendy
UPDATE: 2-12-06
on the phone with mom at the present gettin an update.
aaliyah is in stable condition and doing good. they are in the process of weaning her off the vent. she is eating. they think she has a slight lower lobe case of pneumonia. talking about her coming home on Cpap.
any other word i'll be sure to let y'all know as soon as i find out.
Wendy
should y'all need to get ahold of mom after next friday and for some reason she's not at her computer (hard to believe that one, but sometimes it happens). here are my personal email addys.
Chevy_Girl_77@hotmail.com or
Probert24Fan@yahoo.com
not y'all will need them but just in case.
UPDATE: 2-10-06
9PM
just got off the phone with mom about an hour ago. aaliyah is stable. still intubated and on the vent. but they have stopped givin her the meds that put her in the drug induced coma. mom says other than that everythin there is status quo
this is sue's oldest daughter Wendy. she wanted me to email you and let y'all know that yesterday we took aaliyah out of here via EMS. her O2 sats were 46 on 2 liters. when i got the call from mom this am aaliyah had coded in the hospital this am and they intubated her. she was also has been put in a drug induced coma. i just got back from droppin mom off at Hurley Hospital in Flint. Aaliyah was transferred there from our local big hospital around noon this afternoon.
UPDATE: 9-6-05
aaliyah update: this past Thursday found us traveling downstate to the ped. neurosurgeon's office as mommie noticed another "sore" in the area of my last shunt incision. after they tapped my shunt and did a CSF culture that came back clear so we were on our way home with antibiotics through my mickey button for 10 days and then back for a recheck. when mommie cleaned the area last night she found a suture they missed taking out so praying this is what was causing the "sore". at least we weren't admitted and another shunt revision. thank you for your continued prayers for me and my family
sue
UPDATE: 8-17-05
just wanted to share that we had aaliyah's labs drawn and the doc called today and made changes with her meds. he has started her on keppra and also is decreasing her phenobarb and eventually weaning her off of it. my prayer is her seizures stop with this new regimen. thank you for keeping our babe in your thoughts and prayers. sue
UPDATE: 8-14-05
well we made the 2 1/2 hr each way trip downstate for the neurologist today.
5 of our kiddos were seen and we came home with all kinds on news, scripts,
etc. now don't have to go back for 6 months....februray of 2006...doesn't
that sound like a long time from now?
sean got all his meds refilled and also a rx. for a head CT Scan. he has
always been dx. with hydrocephaly but never anything further has been done.
we are wondering now if his behavior is due to increased cranial pressure
and he needs a shunt. will schedule this come monday and depending on the
outcome will go from there. he is still on 4 different meds and still
behavior is not "fine tuned".
gabriel checked out a-ok and received his rx. for incontinence supplies (yes
my little baby boy will be 3 yrs old next month so we can get his diapers
through the state). also got a rx. for ot and pt and will be doing that
through a private agency. i am NOT ready to send my baby boy off on a
school bus yet.
aaliyah was much more of a complexity for the doc. he ordered a phenobarb
level and gave me a rx. for diastat since she has had a lot more
breakthrough seizure activity. depending on the phenobarb level he may be
adding keppra to her med regimen. he seemed ok with her sleep apnea and just
the oxygen at home right now. her shunt surgery is healing nicely and her
hair is actually starting to grow in already.
heather received her rx. for tegretol and rx for labwork and also a rx. for
ot and pt and a new seating system. she is returning to school this month
and she has outgrown her original wheelchair. she must have one that tilts,
has head supports and also bus tie downs. i would also like a tray but the
doc didn't write that on the rx so we will see. she is doing very well and
i know she will do well in school.....just for the therapies alone.
last but not least makenzie was seen and got her med rxs and the doc was so
funny cuz after he told her she could put her shoes back on he told her "now
give your mom a hug". she did it even. lol what a kid. this is the
latest from the tolin home and now just wait to schedule the tests and get
all the meds filled.
by the time we got home it was after 8pm just in time for baths and bedtime.
*S* now it is quiet and i get a HOT cup of coffee. Sue
UPDATE: 8-5-05
New Picture:
Aaliyah
UPDATE: 8-4-05
thank you all for prayers for our aaliyah. we came home last night after spending 12 days in the hospital (Children's hospital in Detroit) and a new shunt. during this admission we found her heart skips a beat. we live and learn with these little ones. she is doing awesome right now and has even figured out how to have the hic cups...this is a first for this lil girl. she is now donning a new hairdo also. *S* the neurosurgeon shaved her head this time. she actually looks cute. *S*
we also learned that our sean may need a shunt. in talking with the neurosurgeon his behaviors he has been displaying may indicate intercranial pressure. we have always known he was hydrocephalic but has never had seizures, etc. BUT i was informed that behavioral changes are an indication of high pressure and the need for a shunt. he will be seen by the neurologist next week. sue
UPDATE: 7-24-05
i am at Children's Hospital in detroit with aaliyah as she
was seen in the clinic on thurs. admitted and surgery thur.
night to remove the shunt. she had surgery yesterday for a
pic line for iv access and antibiotics. hopefully will have
new shunt in and headed home by the end of the week. thank
you for keeping my baby in prayers also. Sue
UPDATE: 7-15-05
Can I ask that our little Aaliyah be added to the prayer list? Today in bathing her I found a "sore" in the area of her shunt. Last time this turned out to be a staph infection and she spent almost a month in the hospital with a shunt removal and revision. My prayer is this is nothing and heals up just as it has appeared. I know He is The Great Physician and will take care of my little (um big) angel. Thanks so much. in Him and His love, sue and Aaliyah
share my baby girl's smile. *S* she has lost a total of 5 lbs now (so much easier on her heart and lungs) and is doing well other than a "sore" in the area of her shunt we are watching closely. think it is just some skin breakdown BUT we are keeping a close eye on it....last "sore" ended up staph and almost a month in the hospital. my happy babygirl aaliyah checking out our puppy-Boots. sue
UPDATE: 6-3-05
thankyou so much for the prayers. would you believe that they did laser surgery removing "humungous" tonsils and adenoids (docs words) that had her airway totally obstructed. she was extubated at 11am this am (surgery was at 1:30pm yesterday) and we are home and all the way home she played with her voice GROWLING and smiling. they did find her heart enlarged on an xray this time and did an echo BUT said it was "borderlineish" and just to follow up in 6 months to a year. she also was diagnosed with sleep apnea. this sumo girl as her nurse was calling her in picu, is so good at NOT dying i know who holds her in the palm of His hand. the change in docs and hospitals is no comparison. what a wonderful experience this time was. i now know where our kids go for anything needs......thank you ALL that prayed as He did answer. love ya. sue and aaliyah
ps. i took some pics and i will forward them as soon as i download them of aaliyah during this hospital stay.
UPDATE: 5-31-05
I just heard from Sue Tolin and Aaliyah was taken to Hurley Medical Center in Michigan with respiratory failure. Her oxygen saturation was 18 and still falling. She was intubated and put on a vent and transferred via helicopter to Hurley Medical Center in Michigan. This is the hospital she was scheduled to have a T&A at on Thursday. The doctor stated that her throat was almost totally closed off when she was intubated.
Please pray for Aaliyah and her family.
Sandy
UPDATE: 5-28-05
just got the call from the pulmonologist and i have to reschedule my eye surgery
as they want to do aaliyah's T&A next friday...june 3rd. she will be admitted the
day before for surgery on friday morning. thanks for all prayers. sue
UPDATE: 5-27-05
the pulmonologist is going to do a
tonsillectomy and adenoidectomy first to see if this helps with the sleep
apnea opening her throat up. waiting for a call to see when this will be
done. he said ASAP. thank you again for all the prayers. sue
took aaliyah to the pulmonologist today and he wants to do a
tonsillectomy and adenoidectomy asap due to her apnea spells and low oxygen
saturations. this all in hopes of avoiding a trach. sue
UPDATE: 4-6-05
i took aaliyah to her new pediatrician yesterday. what a blessing. besides a pediatrician his specialties are allergies and asthma. well he did allergy testing on aaliyah and she is allergic to all foods including milk and soy. she is currently on pediasure so i am looking for a formula that is NOT milk or soy. only one i can think of is Pregestimil or whatever it is. he also dx. her with Bronchiopulmonary Dysplasia and put her on Pulmocort, Prelone, Claritin and Singulair. i now feel somebody believes in my baby and her right to a quality life. maybe in time we can even get her oxygen down below 2 liters. i made an appt. with this same pediatrician for gabriel in 4 weeks. i already know he has BPD. thank you all for all your love and prayers for our little um big princess. she is 37 lbs and 33 inches at 17 months. *S* sue
UPDATE: 3-31-05
Todays:
well He has shown His face and grace. aaliyah will now have a NEW pediatrician
that will see her for the first time on april 4th and also her neurologist has
just faxed the rx over to the med supplier for the continuous pulse oximeter.
now just for the approval (prior authorization from her insurance company).
we truly serve an Awesome Father that unconditionally loves all His children.
thank you all for your love, thoughts and prayers. He believes in His precious
aaliyah. sue
------------
Sue Tolin just called and said Aaliyah is back in the hospital with pneumonia.
Please pray for this sweet little girl who has been thru so much in the last month.
Sandy
UPDATE: 3-29-05
just back from the hospital again. aaliyah was taken back
downstate via advanced life support night before last. (yes
i spent our 36th wedding anniv. at wm. beaumont hospital and
tim was here with the other children. she was discharged
today (i was supposed to leave for TN this afternoon for the
meeting with our daughter at 9am tomorrow morning). now i
have a ticket for almost $400 that i couldn't use and can't
be there for this "so important per DCS in TN eval" i haven't
slept in over 24 hrs and/or eaten and i am exhausted Plus
totally frustrated. it seems the pediatrician i use up here
doesn't want to take aaliyah and my kids anymore and is totally
blowing us off. we are home tonight but i need to find a ped
for my kiddos and life just goes on....i am so done with
people who don't feel these kids deserve a chance at a quality
life. discharge dx...hypoxia, diabetes insipidus, she is
now on an antibiotic and also oxygen. trying desperately to
get a continuous pulse oximeter which would enable me to know
when to increase her oxygen when her saturations drop BUT have
major probs as NOBODY feels this child deserves it "due to her
diagnosis and it would require a preapproval from the insurance
company IF they would even pay for it. just going to bed for
the night and gonna get some sleep i hope and face tomorrow
morning and start another new day. sue
Sue Tolin just called and said Aaliyah is back in the hospital with pneumonia. Please pray for this sweet little girl who has been thru so much in the last month.
UPDATE: 3-12-05
i want to thank ALL for their prayers and also Praise of Great Physician. aaliyah came home last night after being in the hospital just 3 days shy of a month. she has her new shunt and also has a new diagnosis of diabetes insipidus to add but she is home. thank you all for your love and prayers for our precious baby girl and our family. sue
UPDATE: 3-5-05
i am downstate at my daughter's as aaliyah is still in the hospital. i am going back up to the hospital tonight. aaliyah is still running fevers and they can NOT put the new shunt in until she is fever free. they may have to change out the EVD (external ventricular drain) tomorrow as it has been in for over 5 days now. aaliyah is still fighting hard and we just need the infection (wherever it is) to clear and the fevers gone. they now have her back on the iv vancomycin, gentomycin and ceftapine. she is still gettting breathing txs around the clock for reactive airway disease and also her neurologist came in as she was having more seizures and he ordered a phenobarb level. not sure what is new but will know more tonight. thank you for all the prayers for our special little angel and our family. sue
UPDATE: 3-1-05
Sue has been in touch with me several times today. Aaliyah is again fighting for her life. She has a very serious infection in her shunt, is running a high fever, and started having seizures around 5:00 AM. The doctor told Sue if she wanted to let her go she would understand. Sue told them they are to do everything possible for Aaliyah and let God make the rest of the decisions.
Please pray for this family. This all started January 27th and it has been draining on them. I had the pleasure of meeting the Tolins in person and they are an amazing family. Several of their children are Angels and they are not ready yet for Aaliyah to become one as well. Pray hard and ask God's blessing on all of them.
Sandy
UPDATE: 2-22-05
sorry i have been missing in action BUT my precious aaliyah has been in the hospital since a week ago sunday night. i took her via ems to the local hospital with a temp of 103.8 and horrible breathing. she was taken via advanced life support to Wm Beaumont hospital in Royal Oak on monday morning. tuesday she was taken into the OR and the broviac and shunt placed feb. 1st was was contaminated and removed and she has pseudomonas meningitis. 4 days ago she contracted influenza. she has now been diagnosed with diabetes insipidus (i had her checked for this when she was 2 months old and was told "you are just overfeeding her". i came home last night from the hospital for a few days to be with our other kiddos and hubby. they plan on putting a new shunt in a week from today providing her fever is gone. she is still carrying a fever (she has had a fever since jan. 29th). she is also now dx. with reactive airway disease. it has been a long haul but through it all she is fighting to hang on. appreciate all prayers for our precious angel and family. sue
UPDATE: 2-15-05
I am a friend of Sue Tolin's. She asked me to get in touch with you and let you know that Aaliyah is back in the hospital. She was admitted into the ICU in Beaumont two days ago when they could not get her fever to go down.
At 1pm today they did surgery on her to remove the shunt and central line that the doctors at Covenant had put in her. They were full of infection and Aaliyah has now got meningitis. They have also diagnosed her with diabetes insepidus. The shunt that they removed had not worked so she had all those fluids building up in her again. She now has a drainage tube and will probably be in the hospital for two to three weeks.
Please keep her and her special family in your prayers.
Sincerely,
Judy
UPDATE: 2-10-05
my aaliyah was in the peds this am and is still carrying a temp of 102 plus.
the ped ordered bloodwork tomorrow for blood cultures and she sees the ped
neurosurgeon on friday. tomorrow is kim's appt for her phyical and history
for her surgery on the 22nd. praying for the Great Physician to continue
to cover ALL His precious children. sue
UPDATE: 2-8-05
had to take aaliyah into our local pediatrician for followup from her discharge from the hospital on saturday. it seems she continues to run the fever of 101 plus since discharge and even with iv vancomycin it continues. doc sent us over to the hospital for chest xray and it seems she brought pneumonia home with her. our ped says this is the "bug" that is going around and may linger for up to 3 weeks. i am just so thankful to have her home and know that He is answering all of our prayers. (the hospital stay wasn't the best in the end after i had a pediatrician tell me to my face "with her diagnosis we don't shunt these children, they are just feeders and left to die". needless to say the next day i had the chief of staff of the hospital in my room.)
again thank you all for your continued love, support and prayers for our baby girl and all our children. sue and all the little angels
UPDATE: 2-6-05
well after a very LONG week we are home with one shunt removal and the placement of a new shunt. aaliyah came home on iv antibiotics with a broviac but is so happy to be home. after we got in and situated she heard and saw her siblings and was giving full face smiles....something i haven't seen in a week. her temp she has had since last Tues. was normal and she was one very happy little girl not to mention how happy her siblings were and mom to be able to sleep in her bed last night instead of a reclining chair. we weathered a few problems but we serve an Awesome Father and we are home. thank you for all your love and prayers for our daughter and family. love, sue and family
UPDATE: 2-4-05
Aaliyah is in need of our prayers. She had a shunt revision done and she is running a high temperature and has a staff infection. She also cannot swallow.
She is currently still in the hospital. I will update more when I can learn more...Elizabeth
UPDATE: 1-25-05
MaKenzie decided to "dress aaliyah up" tonight. suet
UPDATE: 1-24-05
her first surgery is at 8am this friday (the 28th) trying to make all the reservations so i won't have to sleep in a chair for two weeks while she is inpatient. i will go up the night before with her (even if we just sit in the waiting room at the hospital overnight) as to taking all our kiddos and driving at 4am from here. she has to be there at 6:30am. her surgeries are going to be done at Covenant Cooper Hospital in Saginaw, MI sue
UPDATE: 1-19-05
just home from neurosurgeon and the shunt has to come out and a new one placed. they are scheduling it for next week and he said plan on two weeks inpatient for all. appreciate all prayers for our "little" chunk. sue
UPDATE: 1-11-05
my aaliyah needs prayers. she has an open ulcerated area by her shunt. taking her into the doc today. please pray for His guidance and healing. sue
took aaliyah to the pediatrician and she put her on an antibiotic for 10 days. she suggested we get in touch with a neurosurgeon and have her checked also. ours is 2 1/2 hrs downstate but she gave me the name of one within an hour and a half here that i will call tomorrow. thank you for all the prayers and your love for our baby girl. sue
UPDATE: 10-30-04
our baby girl is a year old today. she is such a "little" chunk but fills our home and hearts with her love and beauty. today is a bittersweet day also as it would have been our son, raphael's 14th birthday. he left our home and arms for Heaven on 5-20-98. yesterday would have been our joey's 11th birthday. we have a lot to celebrate and the memories of a lifetime. thank you for your continued prayers for our children and All of His children. sue
UPDATE: 10-23-04
found gabriel's outfit in a resale shop in TN when i was there and aaliyah's was sent to her from a friend in east TN. aaliyah will be a yr old a week from today and our raphael would have been 14 yrs old the same day. (our joey would have been 12 yrs old on the 28th of this month). love, sue
UPDATE: 9-21-04
just found out that we have something else to celebrate today besides
gabriel's birthday. AALIYAH MICHELLE TOLIN is officially ours. the
final order was signed today. PTL thank you for our precious daughter.
sue
UPDATE: 8-11-04
aaliyah has her NEW chair. doesn't she look like a little (well) big girl?
sue
UPDATE: 7-13-04
Aaliyah also went but the man that was to make their hand
splints didn't show up. now we have to reschedule. at least we have one
issue resolved....kim is walking without limping due to her leg being too
short. sue
UPDATE: 6-30-04
update on aaliyah. received a call today from the endocrinologist with the
results from her lab work and nothing showed up as far as any endo problems.
thank you so much for praying for our little girl. sue
here is a "newer" picture taken of aaliyah while we were visiting in Ohio
last week.
UPDATE: 6-23-04
aaliyah now 6 months old tipped the scales at 25 lbs 14 oz. and is 31 inches
long. her head measured 51cm. this is a small increase from the last
measurement but the pediatrician did not seem concerned. the pediatrician
noticed her two beautiful bottom front teeth. such a big girl now.
UPDATE: 5-31-04
aaliyah has another tooth on the bottom. wow what a big girl two teeth now.
*S* sue
UPDATE: 5-24-04
aaliyah has her first tooth. what a big girl. the lower left tooth is
through and up so she cut it awhile ago. no fussiness, crying, irritability
so she will hopefully be an easy teether as she cuts the next 19 *S* sue
UPDATE: 5-22-04
just wanted to share that aaliyah was seen by the new endocrinologist today.
he is ruling out diabetes from the testing that was done BUT has ordered
more labwork to be done to check out her pituitary. this labwork will be
drawn this weekend and then we are in wait mode again. praying we find
answers so we can stay on top of our precious daughter's medical situation.
thank you for all your love and prayers. sue
UPDATE: 5-1-04
we are now home from taking 7 of our 10 kiddos to the pediatrick
neurologist. all had great checkups and some had minor changes in meds.
the doctor gave us an order for bloodwork for Patrick and we stopped at the
lab and had it drawn. they are testing him for Angelman's Syndrome. in
time we will know the results.
Aaliyah and Heather both received prescriptions for hand splints to help
their little hands so they don't suffer contractures. Both girls have
cerebral palsy.
Sean was given a prescription for a protective helmet as when over
stimulated and/or frrustrated he is a severe head banger.
MaKenzie had Adderall XR added to her night time med for sleep insomnia due
to prenatal cocaine exposure.
Brent and Brianna had no changes but the doctor feels both are making
wonderful strides and just continue what we are doing. same meds and
dosages for now.
Gabriel will be seen in August as he was just seen this past February. We
stayed overnight at our daughter's as this am tim and i had to be in Detroit
for finger printing as we are getting everything in order so we can go to
Brazil and finalize his adoption.
Thank you all for the
prayers for our children and all the children. We serve an awesome Father.
sue
UPDATE: 4-30-04
small update. today we go downstate for the ped. neurologist appts. brent,
brianna, sean, heather, makenzie, patrick and aaliyah will all been seen for
follow up. will be staying overnight as tomorrow morning we have to be in
Detroit for finger printing for Gabriel's adoption finalization. also hope
to see our newest grandson while we are down there. he is a week old today.
praying for all and Christian love, sue
UPDATE: 4-24-04
just another update...thank you Jesus. was going through my snail mail from
while i was gone and there is all the paperwork for an appointment with the
NEW endocrinologist for our aaliyah on may 19th. they did have us do some
labwork and now i must do 10 days of blood sugar testing before and 2 hrs
after her meals. my prayer is this doctor will help us realize what is
going on with our precious daughter so we are doing all God wants us to do
for His precious child.
again thank ALL the prayer warriors and special people who daily remember my
children and all of His children with your love and prayers. sue
UPDATE: 4-15-04
just wanted to update. received a call yesterday from the new
endocrinologist for aaliyah. we are taking her for some blood work today
and then must do blood sugars on her three times a day for 10 days and
forward them to the doctor. he is due back may 1st and then will take all
the info and see our precious angel. right now her referral was for
hyperinsulinemia.
thank you all for all your love, support and prayers for our precious
children. God's love and mine. sue
UPDATE: 4-2-04
when it came time for the endocrinologist to evaluate aaliyah this is where
the "nightmare" began. he claims there is nothing wrong with her and that
she is just overfed (aaliyah gets 32 oz of formula total through her mic key
button a day). evidently the office staff never managed to put all the test
results from our pediatrician on her chart therefore he sees nothing and the
intake and output chart that was sent, the labs he did see aren't of any
concern to him. she weighed in at 25 lbs and still has massive urination
and blood sugars from 180+ to over 200+. we will be seeing another
endocrinologist for a second opinion in the near future and my children will
not go back to this endocrinologist after this last visit. it is so
frustrating when trying to get the best for our children and knowing what we
are dealing with to have to find a doctor that acts the way this one did. i
am saddened knowing that i still have no answers for our precious aaliyah
and feel i am not meeting her total needs but i will not give up and will
pursue another doctor. God has truly blessed me with this precious angel.
UPDATE: 3-18-04
Aailyah and sister Robyn
UPDATE: 3-16-04
just home from a very long day. left at 9am for an 11:30am appt for aaliyah
with the neurosurgeon following her shunt placement 2 months ago. well the
doctor states since her post op head circ. has not changed from 48cm as of
today and the shunt is definitely working there is something filling the
skull....brain tissue? she was very impressed that aaliyah looked at her
(remembering in the past she wouldn't even open her eyes) and also tried
pushing up on her arms when laid on her tummy. the whole drive with 9
kiddos was well worth it through the snow and all to Praise Him for this
report. we will continue praying and knowing that our little girl is just as
he wants her. we are truly blessed. sue
UPDATE: 3-08-04
ok i finally did aaliyah's hair for the first time tonight. doesn't she
look impressed? NOT she could care less but she was a good sport letting
mommie put in all those ponytails. sue
Shriner's hospital has just talked about getting chairs for aaliyah and
gabriel. we can't even begin to process these as gabriel has no insurance
and aaliyah's is going to be a real stickler.
hugs and love, sue
UPDATE: 2-25-24
Elizabeth, got home finally about 12:30am yesterday morning. sean, aaliyah
and gabriels appts at Shriner's went very well.
aaliyah and gabriel will both be going back. they would like me to do a 3
day admission so they can have a complete eval through the cerbral palsy
clinic. i told them this may be impossible as the distance from home and our
other kiddos. they did make a reccomendation for a kidkart wheelchair for
both babies and also hand splints for aaliyah. her little thumbs are held
in her hands all the time. she is very tight...tone wise.
want to thank all for their prayers for our precious babies.
UPDATE: 2-12-04
aaliyah update. finally received a call tonight from our pediatrician re:
aaliyah's lab tests for either diabetes insipidus or sugar diabetes. our
ped feels there is something going on but she doesn't feel comfortable dx.
with these labs. (the sodium levels were just a "little" off yet her glucose
was 197) she has asked we take aaliyah to a ped. endocrinologist. i have
an appt for brent on march 29th (which so happens to be our 35th wedding
anniv.) and i am going to try and see if i can get aaliyah the same day/time
as the endo. is 2 1/2 hrs away downstate where all our kiddos specialists
are.
UPDATE: 2-5-04
monday we showed up for our trip to Shriner's Hospital in Erie, Pa and
because there was a "miscommunication" somebody didn't do their job we
didn't go and that trip for sean, aaliyah and gabriel has been rescheduled
for Feb. 23rd. this trip involves driving 130 miles downstate to catch the
Shriner's bus out of Detroit and also making sure our other children are
covered as i don't drive due to having a seizure disorder myself. a little
upset but we got through this and now think it is all set for the 23rd.
aaliyah went in yesterday for her first set of baby shots that had to be
postponed due to her vp shunt surgery a couple weeks ago and today went into
the pediatrician and received her synagis shot. from the pediatrician's
office we went over to the hospital and had the blood drawn as i was lucky
to collect the urine sample needed to get the testing done for diabetes
insipidus. she weighed in at a hefty 21 lbs 4 oz today and is just 3 months
old.
UPDATE: 1-16-04
Aaliyah six days post op.
UPDATE: 1-11-04
ok i am just sitting here as i just did a head circumference on aaliyah and her presurgery measurement was 55cm. they placed a slow drain vp shunt and the measurement i just got is 50 1/2 cm. this is even a half cm less than the one done at the docs office prior to her admission. i knew the fontannels were bulging. Praise God and this baby is our true little miracle. thank you all for the prayers. He truly does love HIS children. suet
Just walked in and Aaliyah is a new little girl. her surgery was delayed an hour due to them checking her sugar and making sure all was ok but surgery went without a hitch and we just arrved home after the 2 1/2 hr drive back up north. she returns in a week to have the sutures removed and the doctors and nurses were fabulous including giving me a sealed bag with her hair locks in it from her "first haircut". she just ate and is resting comfortable in her own bed and mommie is also thankful to be home as well as dad who did a remarkable job taking care of the other 8 while i was with aaliyah and the homefront. thank you all for your prayers and concern. love, sue, aaliyah and family
UPDATE: 1-10-04
ok here is our precious little lady almost looking like a smile yesterday just before we left and they unhooked the iv. (they had to suture the iv in as she was a "hard poke"). the one new thing i have seen since her shunt placement is she is able to turn her head from side to side now. she has never done this since placed in my arms on Nov. 14th. her little head was just too heavy with fluid to move. i also was able to see the ct scan and the neuro surgeon stated that once the fluid is drained we will know just exactly how much and if there is any top brain. thanks again for ALL the prayer for aaliyah and also this mom and family. hugs sue
UPDATE: 1-09-04
another update in getting paperwork to the hospital for aaliyah's surgery this morning. i found out her glucose was 208 when drawn last week. i had it checked as she was "flooding" her diapers and diaper doublers. please pray this precious child isn't also a diabetic and if she is God also holds the hands of the physicians i am putting her care under. thank you and God's love and mine. sue
UPDATE: 1-08-04
ok another obstacle for our angel. the hospital just called and said, "we don't accept her great lakes medicaid" now another battle as arrangements are all set for surgery tomorrow morning. thanks for all the prayers. i will not give up or in. sue
problem solving 101....surgery is being done tomorrow but at Children's Hospital in Detroit. yes i gave in. thank you all for the thoughts and prayers. sue
UPDATE: 1-07-04
ok just walked in from the trip to the ped. neuro surgeon and aaliyah's shunt surgery is THIS week at St. John's Hospital in Detroit. don't have the exact day and/or time yet but they will call and it will be this week. they did a stat CT scan and they will place the vp shunt on the right side as not to interfere with the mic key feeding button already placed on the left side of her abdomen and the abdominal scar will be a little lower than the incision from the fundo plication and mic key surgery. has been a very long day leaving here at 8 am this morning but our baby will be feeling better much sooner and now has a new dx to add , hydrocephalus. i will let you know as soon as i know the exact day of surgery. thank you for keeping our little one in your thoughts and prayers. sue
just talked with the surgeon's office and they are getting aaliyah's shunt placement "approved" through her Great Lakes medicaid so it may not be til next week. did i ever tell you i hate "systems" lol sue
surgeon's office just called and aaliyah's surgery is this friday. thank you Lord. sue
Latest:
thank you all for the thoughts and prayers. the hospital has called and
aaliyah's surgery is at 10:30 am friday. we have to be there at 8:30 am. the
nurse warned me she may go into picu following surgery as a precautionary
measure. i have no problem with this in fact usually they get better care in
picu. i will be there with her no matter what though, even if i must stay in
the hallway. thank you all you are a true blessing to me sue
UPDATE: 1-05-04
just wanted to let you know i just got off the phone with the other pediatric neuro surgeon and they are seeing our precious aaliyah tomorrow at 11:30 am downstate. just rearranged her immunization appt. and a pediatrician appt. for another child but she is going to be seen so the shunt placement can be done asap. Thank you Jesus.
Christian love,
sue
UPDATE: 12-31-03
ok friends and mommies home from the pediatrician with aaliyah and not what i wanted to hear but do have a little more help and insight. her weight is ONLY 18 lbs (sorry baby girl mommie added a couple extra lbs.) and her length is 26 inches. now for the not so good news her little head has grown another 3 cm (now 51 cm growing 10 cm since birth and she is only 9 weeks old). i have put a call into one other ped.neuro surgeon to see if she will see her and do her vp shunt before i can get her into the other neuro surgeon on the 13th of jan. i am really worried about my babe. our ped is wonderful and due to her excessive urination has ordered blood work to check her sugar and sodium levels just to rule out diabetes insipidus. she also gave me a rx. for an ointment for the "creases" and states it is a yeast infection due to no air getting in around her rolls. i suggested unfolding 4x4 gauzes and placing them in her neck and she said that is an excellent idea...now to get some 4x4 gauzes. she didn't get her 2 month shots as i have to take her to the health dept. but she also ordered the second synagis injection (for RSV prevention). i was able to get a copy of the ped. neurologist report and dropped it off so she can get Children's Special Health Care Services to cover whatever her Medicaid isn't. all in all it was a good doctor's visit but i am still one worried mommie and love my little angel so much. thanks for listening and any extra prayers are always appreciated. sue
UPDATE: 12-29-03
Another little update on aaliyah she will be seeing the ped. neuro surgeon on jan. 13th in his office to schedule the shunt placement. her little head now measures 49 cm. it was 41 cm at birth just 8 short weeks ago. the fluid accumulation is immense and she now weighs just under 20 lbs and i know a lot of this is the fluid retention in and around her little brain. we are praying for a surgery date as soon as possible once we see the neuro surgeon on the 13th of jan. sue
UPDATE: 12-28-03
I must share...our aaliyah michelle was baptised this am. her Godparents
are very special people we have been blessed to become good friends with
and he is the minister that baptised her and his wife. He is just a
"little" guy at 6' 8" Aaliyah has a lot to look up to in the Lord in
her God parents. sue
UPDATE: 12-18-03
Aaliyah's First Christmas
UPDATE: 12-11-03
We didn't get home til 7pm tonight (the neuro is a 2 1/2 hr drive one way) after the neuro decided he wanted an eeg and they were able to get one done following her appt with him. he increased the phenobarb again to now 5cc twice a day and we made contact with the neuro surgeon to get a surgery date. it has been a long day but productive. i feel so sorry for my little angel. he ordered a phenobarb level and they had to poke her twice. she is now resting comfortably with her sister. thank you so much for your prayers and love, sue
UPDATE: 12-08-03
i called the ped. neuro on our little aaliyah today as she is having seizures i believe with a lot of uncontrolled jerking, eye movements, and very irritable. he increased her phenobarbitol. really questioning her vision and also her head circumference has grown almost 4 cm. he had me call a ped. neuro surgeon to make an appt. for the vp shunt. she sees the neurologist this wednesday so i will know more. she now weighs 16 lbs and is taking via her mic key button 6 oz every 3 hrs. she will attempt to suck from a bottle but gets frustrated. she is such a precious little angel.
UPDATE: 11-26-03
Eliazbeth, just had to update you i took aaliyah to WIC yesterday and after being discharged from nicu on 11-15 to me weighing 9.922 lbs yesterday she weighed 11 lbs 6 oz. amazing what God is unfolding in this precious little ones' life before my eyes. tomorrow is her first pediatrician appt. and i am anxious for this. she will be seen by the ped. neurologist on Dec. 10th which is another big appt. in my eyes as to understanding where she is truly at, ie: blind, deaf, totally missing her brain, etc. but i do know one thing this angel has a heart bigger than Oklahoma City itself where she was born. i still stand in total Praise and awe of our wonderful Maker and Father. He is such an Awesome Father to serve. Christian love, sue
ADDED: 11-23-03
Aaliyah was born Oct. 29th (the same day as our angel son, raphael) and weighed 10 lbs. she is diagnosed with hydranencephaly (brain stem only) on Nov. 7th she had surgery for a fundo and mic key button and will see our pediatric neurologist on Dec. 10th for possible placement of a VP shunt and only the Great Physician knows His plan for this little angel. we are truly blessed to be her earthly parents and family.