Friday, July 29, 2011

He passed!

Yesterday Gregory went to get a  speech and language evaluation. It was done @ "Fiesta Pediatric Therapy". Come to find out they do all therapies so I put a call in for his doctor to get him an OT evaluation.

It took about 30 minutes or so and Gregory passed! She said his articulation is age appropriate! His ability to receive information was at a 85 and anything at a 85 or higher is average for his age. So, he's right at the cusp. His ability to express information was at a 95 and again, anything a 95 or higher is average. So, at the cusp again. She said with him starting preschool, this will only improve. :) So, yeah for Gregory!!!! One thing down.

Saturday, July 23, 2011

Happy Mama

So, I guess "mommy boot camp" paid off . . . Tommy got home Thursday from being gone a little over a week. He said he can tell a difference in Gregory. He's more kind, better behaved, and talking more. In no way is he a completely different child . . . but it does make this mama happy to know she's made a difference. A special bonus? Gregory had become more close to me. Ü Which for any of you who know me, he's not exactly what you call a mama's boy. Thank you Lord for this past week to be just be with my boy. Ü

Tuesday, July 19, 2011

Mommy Boot Camp

So, Gregory and I were suppose to leave last Thursday to go spend a week with my mom and mamo in Star, ID. My mom works for Alaska Airlines so we were flying standby. We tried 3 days and didn't make it. My mom even flew down Saturday to meet us at the airport so we'd have higher priority with getting on a flight and still no success. So, we went and had lunch at Chili's in terminal 4 and then back to our separate homes. We were VERY sad.

Had to regroup. Came up with a "Mommy Boot Camp" plan to work on the issues we've been having with Gregory. When else would I have a week to spend with my guy? I would never just take vacation days from work. I took this as a blessing from God. And this is what I came up with:

Our Daily Schedule

Wake up
                                      Devotion (me)
                                      Outside Play                                           
                                      Dressed (teach GT)
                                      OT time
                                      Poop (5 min)
                Errands/Something fun
/12:00                Lunch                                                                
                  School Time
                    OT time
                    Reading Time
                              Nap time
                    Me time
                    Work in office
                    Work on a project
                                       Read book on GT
                                       To do list
                                       GT wakes and has snack
                                       GT play time in room
                               Make dinner
                     Music Time
                     OT Time
                     Outside play time
                               Clean up
                               Get ready for bed
                              Bed time

Now, as anal and weird as this may seem to all of you . . . I don't hold it tightly. If you know me, I have to at least have a plan . . . and then we go from there. Just wanted to make sure in these days by ourselves with nothing to do . . . that important things would get done like routine (which GT needs), OT time, working on potty training, School time, Me time, Gym time, time to get caught up in our office, and work on behavior issues. Today is the 3rd day of it and its going pretty good. :) Time will tell . . . but it can only do good, right?

Pushing & Hugging

I try and keep this blog only about Galactosemia . . . so parents have a place to go to only learn about Galactosemia. There are things going on with Gregory that may or may not be related to Galactosemia. I haven't been posting them as much but I think I need to more in case other parents are experiencing what we are. Maybe its just therapeutic for me to write it . . .

Gregory was diagnosed with Sensory Processing Disorder at one time. I think he is more mild to moderate with it. He will be getting evaluated again so we'll see what a second opinion means. To learn more about this go to

There is too much to go into about it now . . . hopefully you will learn more about it as I share more . . . I really only wanted to use this post to share a moment(s) I had with him today.

To put it mildly . . . Gregory needs to feel everything "more". Certain things just set him off. Or he'll need to just come and push me really hard from behind. I am not a "rough" person by nature so I would take this personal even though I knew he wasn't making it personal. It would hurt my feelings. I have since gotten over that and recognize it for what it is . . . his body isn't getting the "rough" in put it needs so he's satisfying a need. Nothing else.  So that was good. But then there was the, "No mommy, stop. Go away." when I'm in his presence . . . and other "hurtful words" (i feel silly saying my 3 yr old is hurting my feelings but you know what I mean.). But for the first time today I didn't take it personal. I can't. I know he loves me.

One hard thing for Tommy and I has been that he hasn't been into the snuggly type of touch and cuddling. We are very much this way and to not share that with your child is really hard. We're not getting that physical need that we need.

This morning Gregory woke up and crawled in bed with me to watch cartoons while I had coffee and read my magazine. I asked him if he wanted to snuggle a couple times and he remained on the other side of the bed sucking his thumb, holding lamby and said, "No, my side." in a stern voice.  Then 10 to 15 minutes later he slowly scootches over to my side and gives me a big hug. That moment will hold me the whole day. Its has to. Who knows when I'll get another moment like that. I didn't realize how much this was bothering me until I'm sitting here typing with tears rolling down my face.  I love the moments when we are out and about and the only way for him to get out of the truck (because he's too scared) is to hold on to me and I put him down. I look forward to this each time as I hug him really tight and a few seconds too long. I miss him. I keep telling myself that this too shall pass.

I know I should proof read this right now before I post but am crying too  much. But knowing the anal part of me I will later. :) Got to make me and my little man some lunch. Ta ta for now.

Friday, July 15, 2011

Mmmm . . . Sorbet!!!

Its hot out. You're bored. Its just you and your little man. He won't take a nap. You just bought a Zen Zen Yogurt coupon off So what do you ? You go!!! But wait a second . . . I thought Gregory can't have frozen yogurt?! He can't. But he can have sorbet and they have some! I had to have the lady check the ingredients just to be on the safe side. He had "Fruit Punch" sorbet with strawberries and sprinkels which he repeatedly spit out because he didn't like them in his mouth. Ü It was a fun 45 minutes or so with my little man. When he's happy, I'm happy.

Monday, July 11, 2011

Our new friends!

On Friday, Gregory and I got to meet Jenny and her 2 month old daughter Hannah. Hannah was born with Galactosemia too. It blessed me so much to be able to "try" and answer all her questions. I would have loved to have had something like that when Gregory was born. Them and their family were so sweet! Here's to a new friendship!

Wednesday, July 6, 2011

Thank you God.

In hopes of better understanding Gregory, I have been praying that God would direct us to the write people that can help us with all the issues we are having with Gregory. I started this blog in hopes of getting help and to help others. 

God has put me in contact with other moms that are experiencing some of the same things we are with Gregory. I met a mom that owns a consignment store by our house who's daughter was also diagnosed with Sensory Processing Disorder. I saw a friend of mine who I had not seen in awhile last night who's 4 year old son sounds just like Gregory. We both had no idea we were both going through the same thing. I have been in contact with other moms who have kid(s) with Galactosemia. I'm meeting one mom this Friday here in the Valley. I even came across a woman in her 20's with Glactosemia who I emailed and she wrote me back. 

God is so good and I feel so loved by Him right now. Not to mention the big dose of patience He has given me and Tommy right now.

Monday, July 4, 2011

Fathers Day=Lemon Sorbet

Fathers day this year started out really fun . . . Breakfast at home and in bed with daddy . . . church . . . and then from the moment I picked him up from children's church . . . for reasons we will never know but hope to some day soon figure out . . . Gregory was obstinate in every sense of the word and more. Needless to say, this turned into a very rough day with Gregory that went from church to lunch with my dad and dinner with Tommy's dad. Towards the end of the day we were both spent. But before we went left my father in law's house it was time for home made ice cream. I had made him his own lemon sorbet. The 10 minutes of him eating 2 bowls and looking like he was in heaven and saying "sorbet" like a little french man . . . to make something for your child that brings them such joy . . . PRICELESS.


2 cups of sugar
2 cups of water
1 1/2 cups freshly squeezed lemon juice (i use the bottled stuff)

Combine the sugar and water in a medium saucepan and bring to a boil over medium-high heat. Reduce heat to low and simmer without stirring until the sugar dissolves, about 3-5 minutes. Cool completely. This is called a simple syrup, and maybe be made ahead in larger quantities to have on hand for making fresh lemon sorbet. Keep refrigerated until ready to use.

When cool, add the lemon juice. Stir to combine. Poor into your ice cream maker or freeze until consistency is right.  Enjoy!
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