This Saturday, Lily took her first 2 steps by herself and without her walker! Oh happy day!!! I cannot wait for the day when I can just put her down and she'll be off and running. Especially since she is getting heavy to carry. :-) Last week, her physical therapist was saying that she wouldn't be surprised if she walked any day now and I was just shocked at how fast it is happening! Lily is truly amazing! You can't tell her she can't do something because she will do it. Actually I think this can pertain to alot of handicapped children - they truly are amazing at overcoming their adversities! I was watching 'Extreme Home Makeover' last night and the family had adopted a 6 year old triple-amputee and the stuff she was doing on the show was truly amazing!
Sunday, August 23, 2009
Thursday, August 20, 2009
Lily had her OT evaluation yesterday and they are recommending her for twice a week for 6 months. OMG as if she doesn't already have enough appointments they want to add another and two a week!!! Because her trunk is weak and she isn't grasping or trying to grab things they have evaluated her at a one-month level for her motor skills. I am going to see if we can do the OT services here at Mission so I can take her on Tuesday and Thursday since I am working from home on those days. In the meantime they have stressed tummy time for her which should increase her trunk strength and hopefully everything else will be quicker to relearn. So between the appointments and sorting all the billing issues from the hospitals and specialists this has become a full time job and my leave of absence ends in 2 1/2 weeks. Eek!!!! I am sure things will fall into place, hopefully. Thank God Sammy's MRI didn't show anything so we don't have to see any specialists for him and Danika's eczema is healing so her allergist said he just wants to follow up in 4 months. So the only appointments I have to worry about for them is their well exams (knock on wood)! I am hoping to enroll Danika in ballet but we'll see if I can handle another scheduled thing to add to my calendar. These are the times I wish I could clone myself.
Monday, August 17, 2009
Sammy's doctor, Dr Cox, called Friday evening and the MRI results showed no tumors or bleeding YIPPEEEE!!!! But the radiologist noticed that he had showed some immaturity of myelin development and he recommended another MRI in 6 months. Dr. Cox said that she didn't think it was anything to worry about as long as he was developing fine, she just wants us to monitor his development. Plus she said that she is not sure what the norm is since they usually do not do MRIs on healthy 4 month old infants. He actually rolled over by himself yesterday so he seems to be developing normally. I am hoping that he won't have to have another MRI done because he wasn't a happy camper with the whole fasting before the MRI and was very woozy from the Versed and anesthesia. OK I am learning way too much about medical terms than I want to ;-) Lily's first physical therapy appointment went well. The PT, Carolyn, gave us more exercises to do with her at home. I didn't realize how strenuous it was for her, after 40 minutes she had had enough and started crying during the exercises but Carolyn wanted to push her a little more. Good thing I'm not the therapist because I was all "I think she's done" when she started crying. I just have to keep telling myself that this is good for her so she doesn't fall behind developmentally. Thanks again everyone for keeping the twins in your prayers!!!
Monday, August 10, 2009
OK I survived 3 1/2 hours alone with the twins with only one scare. I had put the kids on the floor for tummy time and I went to the other room to get more toys from the toy bin and all of a sudden Lily started crying really hard and I rushed over and picked her up and she calmed down, she just was tired of being on her tummy and wanted to take a nap. Taking care of the twins alone is harder than I remember I guess it's because I feel like I have to be extra watchful of Lily. I just can't wait until I can stop worrying that any minute Lily will have a seizure or something but I think this worry will stay with me for a LONG time. I just have to keep reminding myself that it's God's will and he has showed us many miracles in Lily thus far and I just have to trust Him. I just get overwhelmed at times and feel like I am not strong enough to handle what I have been given but I know God wouldn't give me anything I can't handle. OK enough pitying myself ;-) I need to focus on the daily blessings of having Lily here with us and praying for a miracle for her to be cancer-free. Thanks everyone for keeping us in your prayers!!! It means SO SO much to me!!!
It's 4:40 am and ten minutes ago I woke up with a jolt and had to gasp for air and was all panicky...I am chalking it up to either this is the first time in I can't even remember that I have slept in without Lily waking up because she usually wakes up around 2 or 3 am for a feeding or tomorrow (actually today Monday) that I will be alone with the twins for the VERY FIRST time since Lily had her seizure and was rushed to the hospital. I will only be alone with them for a couple of hours until my parents arrive but I guess I am worried that something will happen. I know it's an irrational fear and I will have to be alone with them eventually but I guess I have been slightly scarred by what happened the last time I was alone with the twins. My rational side knows the percentage of a repeat performance is VERY VERY low but I guess my overactive imagination keeps taunting me and saying "What if?!?!?!??!" I am hoping by actually writing this I will feel a little at ease and be able to calm down and fall back asleep. I know everything is in God's hands and He is always with me and I just have to let go of these irrational fears and let Him lead the way...OK have to check on Lily I think she is starting to wake up if anyone comes across this today please pray for me and ask God to send me some calmness.
Monday, August 3, 2009
I am hoping and praying that I don't jinx this by sending out this email but...the baptism of Lily and Sammy is on for Sunday, August 30. I will be sending out invitations out later but I just want to make sure you guys save the date. Lily's oncologist gave us the green light to have Lily at the baptism ceremony providing she doesn't get a temperature or anything. Since she was baptized at the hospital already, I spoke to Father Reynold who will be doing Sammy's baptism and he wants Lily to be part of the ceremony since we were intending on them being baptized together and he wants the godparents to be able to be there to witness. I hope you guys can all make it, I know it is short notice so I totally understand if you cannot. I'm still working out the reception to follow the baptism so as soon as we get that finalized I will be sending out the invites.